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Living Your Dreams When Living with Rare Disease: How Chris Anselmo Learned to Follow His Heart - Make it stand out Photo by Jean-Louis Paulin on Unsplash https://www.knowrare.com/blog-v2/curegrin monthly 0.5 2025-01-24 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855247091-SW8LRDTNSLMRWEM0INLU/Untitled%2Bdesign.jpg Blog v2 - Organization Spotlight: CureGRIN - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855249529-DE80VOLY10HKNUVDQ8BV/Picture1.png Blog v2 - Organization Spotlight: CureGRIN - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/share-your-rare-gent monthly 0.5 2025-01-16 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855255267-QPU4R949RBXLNUFSBCNC/image1.jpeg Blog v2 - Share your Rare: Edward Gent - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855256121-NIEZ4432T3ZHJPRJDW3R/Screen%2BShot%2B2024-10-15%2Bat%2B5.03.45%2BPM.png Blog v2 - Share your Rare: Edward Gent - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/news-in-scd monthly 0.5 2025-01-23 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855263641-H4BVIZR43C6PQK35V97M/roman-kraft-_Zua2hyvTBk-unsplash.jpg Blog v2 - Latest News in Sickle Cell Disease - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/bliss-health monthly 0.5 2025-01-27 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855272038-8PWKHDH74EYLDLSUVE7O/Untitled%2Bdesign.png Blog v2 - Organization Spotlight: Bliss Health - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855274303-9DQBNKTLLW1WD5PUWE4D/647e85ecab82f8b35b1e25a4_Screenshot%2B2023-05-16%2B180712.png Blog v2 - Organization Spotlight: Bliss Health - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/perceptions-of-pain-research-shows-its-personal monthly 0.5 2025-06-30 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855281890-8HNOZRMB9UXADJWDRA0K/unhappy-young-woman-suffers-from-pain-neck-feels-tired-massages-neck-feels-discomfort-closes-eyes-wears-casual-orange-jumper-isolated-blue-wall.jpg Blog v2 - Perceptions of Pain: Research Shows It’s Personal - Make it stand out Designed by wayhomestudio https://www.knowrare.com/blog-v2/access-to-high-cost-treatments monthly 0.5 2025-01-23 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855289533-C2NXF59656NVE6S8NLC9/overhead-view-stethoscope-us-currency-note-white-background.jpg Blog v2 - Three Ways to Get Access to High-Cost Treatments - Make it stand out Designed by freepik https://www.knowrare.com/blog-v2/becca-salky monthly 0.5 2025-01-16 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/99ac169d-7a8f-40ea-92c1-f974e7e0a2c7/Salky.png Blog v2 - Changemakers in Rare: Becca Salky - Make it stand out Becca Salky, Rare Disease Warrior and Self-Taught Medical Detective. https://www.knowrare.com/blog-v2/rare-insights-new-podcast-from-know-rare monthly 0.5 2025-01-14 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855300751-TECA2F4PKRE37O8LJKDS/podcast_art%2Bcopy.jpg Blog v2 - Announcing Know Rare’s New Podcast Series: Rare Insights - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/mens-health-week-2024 monthly 0.5 2025-01-24 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855311059-O716L1TCBRBTTNXO4KTK/iStock-1319763230.jpg Blog v2 - Why Men's Health Week Matters for the Rare Community - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/know-rare-pride-month-2024 monthly 0.5 2025-01-02 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855322363-OF14L3RVINEYXMHZ2KBN/iStock-1471006528.jpg Blog v2 - How Know Rare is Celebrating Pride Month - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/living-with-myositis-lindsay-guentzel-webinar-know-rare-connect monthly 0.5 2025-01-21 https://www.knowrare.com/blog-v2/a-wise-investment-risk-reward-chris-anselmo monthly 0.5 2025-01-20 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855336421-MLS048RJB1R00F28I3Y5/iStock-2151566204.jpg Blog v2 - Embracing Risks: How Taking Chances Enhances Life with a Rare Disease - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855338100-JHPC5C5DIITKLKKILLYU/iStock-1252802545.jpg Blog v2 - Embracing Risks: How Taking Chances Enhances Life with a Rare Disease - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/the-sumaira-foundation-at-emory-clinic-tsfs-atlanta-patient-day-2024-mogad-nmosd monthly 0.5 2025-01-24 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855347872-D3XO9RSR0PQGLDTISW7J/sumairaAtlanta.png Blog v2 - Mark Your Calendar for TSF's Atlanta Patient Day - Make it stand out The Sumaira Foundation presents the Patient Day for NMOSD & MOGAD in Atalanta, on July 21, 2024 https://www.knowrare.com/blog-v2/international-clinical-trials-day-2024 monthly 0.5 2025-01-20 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855353729-ZYPVO5AAGV8YTQJDOSWA/iStock-1397731964%2BCLINICAL%2BTRIALS.jpg Blog v2 - Celebrating International Clinical Trials Day - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/exercise-and-myositis-new-research monthly 0.5 2025-01-27 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855364524-U2KF13J9Y8JONGWQ9LY7/iStock-932252642.jpg Blog v2 - The Surprising Link Between Exercise and Myositis - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/gina-de-millo-wagner-memoir-forces-of-nature monthly 0.5 2025-06-26 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855375738-S1EHK7EKT1JQU73K5VU6/9781960018793_p0_v1_s600x595.jpeg Blog v2 - On Family, Fortitude, and Forces of Nature - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/lindsay-guentzel-on-life-with-myositis monthly 0.5 2025-01-07 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855385142-5UM8CET54YA32SPL2CXE/LindsayMyositisHeader.jpeg Blog v2 - Lindsay’s Story: What It’s Like to Live with Myositis - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855386644-2V4G8GTX284KRWU5GIIZ/LindsayMyositisFacialSwelling.png Blog v2 - Lindsay’s Story: What It’s Like to Live with Myositis - Make it stand out Guentzel at the onset of her facial swelling in January 2023 (left); and hours after being discharged from the emergency room three weeks later (right). https://www.knowrare.com/blog-v2/may-is-myositis-awareness-month-2024 monthly 0.5 2025-01-27 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855398894-DRPGYQYY9P3KLDB7CGZC/Untitled%2B%25281200%2Bx%2B800%2Bpx%2529.png Blog v2 - May Is Myositis Awareness Month - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/the-underappreciated-art-of-slowing-down monthly 0.5 2025-01-21 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855411495-ONV9KIA0AS1BUQQ2XB9O/iStock-1016714956.jpg Blog v2 - The Underappreciated Art of Slowing Down - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/q1-2024-rare-disease-news monthly 0.5 2025-01-08 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855417539-UDOHNMDZ5Z2Y89LAMGX5/iStock-637307756.jpg Blog v2 - Why 2024 Is Already an Encouraging Year for the Rare Disease Community - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/organization-spotlight-international-waldenstroms-macroglobulinemia-foundation-iwmf monthly 0.5 2025-01-20 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855422875-I5VLHNBJUIMCFW85AH5O/IWMF_Spotlight.jpg Blog v2 - Organization Spotlight: The International Waldenstrom's Macroglobulinemia Foundation (IWMF) - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/defining-the-disease-the-mog-project monthly 0.5 2025-01-27 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855429130-HM8T43S3FV2K72X20XS1/iStock-1168894271.jpg Blog v2 - Defining the Disease: The MOG Project - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/organization-spotlight-the-mog-project monthly 0.5 2025-01-16 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855438258-SQN64G0G0O1PHVZXDRDZ/OrgSpotlightMOGProject.jpg Blog v2 - Organization Spotlight: The MOG Project - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/congenital-myasthenic-syndromes-cms-infograph monthly 0.5 2025-01-27 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855444310-EGHIPLYBMVYPCDWK17V5/CMS%2Bvs%2BMG%2B-%2BKnow%2BRare%2Bversion%2B-03-26-2024.jpg Blog v2 - 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The Link Between Oral Wellness and Your Overall Health - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855474020-UZSTNL0CR9Q9XXXCYTW1/iStock-1413548874.jpg Blog v2 - The Link Between Oral Wellness and Your Overall Health - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/erin-paterson-huntingtons monthly 0.5 2025-01-02 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855481269-XX44U1U67GFL1QN6QY26/familyAbstract.png Blog v2 - All Good Things - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855483253-5YIJ9MMN8VU15QRVUQPW/allGoodThingsPaterson.png Blog v2 - All Good Things - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/what-to-know-about-observational-studies monthly 0.5 2025-01-24 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855491045-F4U6B9SLSDT63E2MTH8P/iStock-1297604574.jpg Blog v2 - What to Know About Observational Studies — and Why They May Be Right for You - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/orits-story-mccune-albright-syndrome-with-fibrous-dysplasia monthly 0.5 2025-01-27 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855495608-FB15CHIZ7DY8KY3N229C/oritsStoryWIDE.jpeg Blog v2 - Visiting the Disease: Orit’s Story - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/trial-equity-organization-spotlight monthly 0.5 2025-01-27 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1b50b877-883b-4e92-96b3-c74cad656d92/KR_BLOG_SPOTLIGHTS.png Blog v2 - Organization Spotlight: Trial Equity - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855506767-SRG8Z9RUPWG5FIPGCFWC/Otis%2B2.jpg Blog v2 - Organization Spotlight: Trial Equity - Make it stand out Trial Equity cofounder and principal consultant Otis Johnson https://www.knowrare.com/blog-v2/gm2-pfdd-meeting monthly 0.5 2025-01-16 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855511882-Y1SK1JTQQISQ4DBWFAS0/hannah-busing-Zyx1bK9mqmA-unsplash%2B%25281%2529.jpg Blog v2 - National Tay-Sachs & Allied Diseases Association Hosts First of Its Kind Drug Development Meeting for GM2 - Make it stand out Photo by Hannah Busing on Unsplash https://www.knowrare.com/blog-v2/celebrating-rare-disease-month-2024-with-know-rare monthly 0.5 2025-01-29 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855517554-FT8LSBJ0Y9SYQWJ8HQHN/iStock-1158005042.jpg Blog v2 - Four Empowering Ways to Mark Rare Disease Month - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/how-to-ask-for-help-chris-anselmo monthly 0.5 2025-01-20 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855525221-WHW0Z8IME6FZPNIQ2ZIO/iStock-1422164584.jpg Blog v2 - Embrace the Ask: How to Seek The Support You Need - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/raising-teens-substance-abuse-and-rare-disease monthly 0.5 2025-01-27 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855530576-L31CE7VWTGPTWNUVD2CS/raretipsforyouth.jpg Blog v2 - Teens, Substance Use, and Rare Disease - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855531900-LKN7AMY2KR34LO47FYA3/Hadland_Headshot.jpg Blog v2 - Teens, Substance Use, and Rare Disease - Make it stand out Dr. Scott Hadland https://www.knowrare.com/blog-v2/news-roundup-rare-disease-news-2024 monthly 0.5 2025-01-16 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855536944-TADOI6AO0N2AU4SCMSNL/iStock-1302842394.jpg Blog v2 - Rare Disease News Roundup - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/why-its-important-to-ask-for-help-chris-anselmo monthly 0.5 2025-01-20 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855542117-IV0J913OR0HAVHWI6J0T/iStock-1354589875.jpg Blog v2 - Why Is It So Hard to Ask for Help? - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855543466-APKMHXMVLBR5Q6X3VU2C/iStock-1390777149.jpg Blog v2 - Why Is It So Hard to Ask for Help? - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/edgewise-duchennes-beckers-new-treatment monthly 0.5 2025-01-20 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855550536-11EETASVEIZD9KXVKRJO/iStock-1653283480-clinical-trial-FDA.jpg Blog v2 - Edgewise Therapeutics: New Treatments for Duchenne and Becker Muscular Dystrophy - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/national-influenza-vaccination-week monthly 0.5 2025-01-22 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855557379-2EW62CNECSSZQL16K4FF/iStock-1326666679.jpg Blog v2 - Safeguard Your Holidays: The Importance of Flu Protection - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/avery-project-caitlin-eppes monthly 0.5 2025-01-23 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855564539-ROHBZXG3KVY98S2YPYC8/AveryCaitlinWIDE.jpeg Blog v2 - Avery's Remarkable Rare Path: A One-in-a-Million Diagnostic Journey - Make it stand out Caitlin Eppes (left), rare mother, with her daughter Avery (right). https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855565585-2Y61MU4VL9JY4VCHNTW1/Avery.jpeg Blog v2 - Avery's Remarkable Rare Path: A One-in-a-Million Diagnostic Journey - Make it stand out Avery, in a gait trainer https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855566526-O3TRW1I91JT4MNZQ4FLJ/AveryCharlieWIDE.jpeg Blog v2 - Avery's Remarkable Rare Path: A One-in-a-Million Diagnostic Journey - Make it stand out Avery (left) and Charlie (right), siblings https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855568051-ZTYI1HKT6FZ9QRAAX478/EppesFamily.jpeg Blog v2 - Avery's Remarkable Rare Path: A One-in-a-Million Diagnostic Journey - Make it stand out The Eppes family https://www.knowrare.com/blog-v2/anxiety-the-unwelcome-visitor-chris-anselmo monthly 0.5 2025-01-27 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855573810-03G7X1VDW5TJG3RCB0V1/iStock-1064027400.jpg Blog v2 - Anxiety: The Unwelcome Visitor - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855574774-LJ26Z8LENS1CWEDAZZCS/iStock-1323039401.jpg Blog v2 - Anxiety: The Unwelcome Visitor - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/reducing-steroid-usage-for-rare-disease-clinical-trials monthly 0.5 2025-01-22 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855582913-QO2QO5QM8I1UJW7WMF6X/steroidSparingWide.jpg Blog v2 - Have A Goal To Taper Off Your Use Of Steroids? Many Clinical Studies For New Drugs Share The Same Mission - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855583959-GWWLH3B0ZCKP7IYYKTTD/towfiqu-barbhuiya-ssZ6x-gaO0c-unsplash.jpg Blog v2 - Have A Goal To Taper Off Your Use Of Steroids? Many Clinical Studies For New Drugs Share The Same Mission - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/pregnant-after-rare monthly 0.5 2025-01-14 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855590632-VO7M0ATXIBHTBO3ZDIW0/headerimagePregnantAfterRare.jpg Blog v2 - Pregnant After Rare: Week 30 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855591984-RHMCZ5YEBKFQJEMORL8C/IMG_0445.jpg Blog v2 - Pregnant After Rare: Week 30 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/know-rare-storybook-ball-2023 monthly 0.5 2025-01-17 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855599507-HPHY99LTI165474FZWS8/KnowRareStorybookBall.jpg Blog v2 - From Medical Advisor to Fundraiser: A Mom and Know Rare Team Member Helps the Hospital that Helped Her - Make it stand out Know Rare team members Liz Kay (Business Development and Partnerships), Laura Will (Medical Advisor), and Kelly Pesek (Study Center Support Manager) at the Storybook Ball (pictured left to right). https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855600496-W6A2K0I40NBA9DCLO69P/LauraWillStorybookBall.jpg Blog v2 - From Medical Advisor to Fundraiser: A Mom and Know Rare Team Member Helps the Hospital that Helped Her - Make it stand out Laura Will, KnowRare Medical Advisor, and Dr. Will Curry, Chief Medical Officer of Massachusetts General Hospital. https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855601955-SJJ5KBB4N2FSJIUM36MM/Laura_.jpg Blog v2 - From Medical Advisor to Fundraiser: A Mom and Know Rare Team Member Helps the Hospital that Helped Her https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855602935-RC6O5J2ZO3N73RFFZMKB/Sponsorship.jpg Blog v2 - From Medical Advisor to Fundraiser: A Mom and Know Rare Team Member Helps the Hospital that Helped Her https://www.knowrare.com/blog-v2/metabolic-dietician-nutrition-rare-disease monthly 0.5 2025-01-20 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855608097-V45GDAA0F2UD6SUG3AFN/iStock-1060858070.jpg Blog v2 - Expert Advice on Managing Nutrition for Rare Disease Patients: Insights from a Metabolic Dietitian - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855609126-N3X0H7WWJZUOZHYYL3SQ/iStock-184982138.jpg Blog v2 - Expert Advice on Managing Nutrition for Rare Disease Patients: Insights from a Metabolic Dietitian - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855610061-B1E1NP1EJ9CJFQ51FW3K/iStock-1353631308.jpg Blog v2 - Expert Advice on Managing Nutrition for Rare Disease Patients: Insights from a Metabolic Dietitian - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/parents-on-life-with-refractory-epilepsy-seizures monthly 0.5 2025-01-19 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855615387-SPZGJXH7KLX0BGYCG95X/IMG_3701_wide.jpg Blog v2 - Refractory Epilepsy: Reflections and Insights from Parents and Clinicians - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855616907-ZP70DO9BMA2IFLTAHUVC/iStock-1464627960.jpg Blog v2 - Refractory Epilepsy: Reflections and Insights from Parents and Clinicians - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/know-rare-tips-emotional-support-for-a-newly-diagnosed-friend monthly 0.5 2025-01-20 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855623934-5PY129DEEDD9T2VKIZNF/iStock-1469986466.jpg Blog v2 - Know Rare Tips: How to Support a Friend Who’s Been Diagnosed With a Rare Disease - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/child-life-specialist-katie-whelan monthly 0.5 2025-03-07 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855630255-ZO9RGLVN95MAZGQEAIYW/IMG_2331.jpg Blog v2 - What is a Child Life Specialist? - Make it stand out Laura Will (center), Know Rare Community Manager, playing with her two children, Alden and Hadley (left to right). https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855631410-B6SHTCHXH2NIVQOMQC16/%2527s%2BDaily%2BActivities.jpg Blog v2 - What is a Child Life Specialist? - Make it stand out An Activities of Daily Living (ADL) chart that Katie developed for a child in her care. https://www.knowrare.com/blog-v2/the-power-of-palliative-care monthly 0.5 2025-01-16 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855637553-NKEGXYN1EHL09UY60286/9814.jpg Blog v2 - The Power of Palliative Care - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/fda-approval-zilbrysq-zilucoplan-raise-clinical-study monthly 0.5 2025-01-21 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855645544-OS69NAYNVTBTA3Q82VW2/iStock-1286971245.jpg Blog v2 - Clinical Trial Paves the Way for a Groundbreaking New Myasthenia Gravis Treatment - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/know-rare-living-with-refractory-seizures-video monthly 0.5 2025-01-20 https://www.knowrare.com/blog-v2/know-rare-connect-journaling-your-journey monthly 0.5 2025-01-16 https://www.knowrare.com/blog-v2/know-rare-connect-first-live-event monthly 0.5 2025-01-20 https://www.knowrare.com/blog-v2/chris-anselmo-know-rare-telling-your-story monthly 0.5 2025-01-23 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855673867-NRHBYPA93KG2UQ0KAVQQ/whats-your-story-iStock-1468533523.jpg Blog v2 - We All Have a Story to Tell - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855675064-BTJPTOUV837G84S1F7F8/microphone-matthias-wagner-QrqeusbpFMM-unsplash.jpg Blog v2 - We All Have a Story to Tell - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/chris-anselmo-know-rare-role-models monthly 0.5 2025-01-27 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855682319-UU82BWPNI896IOXN2J4A/help-support-advice-guidance-iStock-519749080.jpg Blog v2 - Role Models Light the Way - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855683514-R2UR1DTNKQ42QEBI1XPQ/which-way-guidance-iStock-539945390.jpg Blog v2 - Role Models Light the Way - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/introducing-chris-anselmo-hello-adversity-for-know-rare monthly 0.5 2025-01-20 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855693657-JP8YLS1UPID31OK1YN85/Chris%2BAnselmo%2Bheadshot.jpg Blog v2 - Hello, Adversity: Introducing Chris Anselmo - Make it stand out “Hello, Adversity” author Chris Anselmo is a new contributor to Know Rare. https://www.knowrare.com/blog-v2/donnarae-menard-clinical-trials monthly 0.5 2025-01-21 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855699484-ND87IZPYWIVPPODCL84J/DonnaRae%2BMenard%2Bwide.jpg Blog v2 - My Unexpected and Powerful Clinical Trial Journey - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/srna monthly 0.5 2025-01-20 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855704154-LYADYSD049OAB7E7XOVL/KR_BLOG_SPOTLIGHTS%2B%25283%2529.png Blog v2 - Organization Spotlight: Siegel Rare Neuroimmune Association (SRNA) - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/cure-cmd monthly 0.5 2025-01-16 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855716812-KT684PUV093E2RTK8COO/KR_BLOG_SPOTLIGHTS%2B%25282%2529.png Blog v2 - Organization Spotlight: Cure CMD - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/avm-alliance monthly 0.5 2025-01-27 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855722329-UI4TSH7X4CYDYI0EAQ2K/KR_BLOG_SPOTLIGHTS.png Blog v2 - Organization Spotlight: The AVM Alliance - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/participating-in-a-clinical-trial monthly 0.5 2025-01-23 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855732192-6D6CB1LMB3MJZHMGOSUL/istockphoto-1138295318-612x612.jpeg Blog v2 - Why You Should Consider Participating in a Clinical Trial - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/how-much-do-you-know-about-your-myositis monthly 0.5 2025-01-02 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855738448-KBYC50PGGKYZTPLLZST7/unnamed%2B%25283%2529.png Blog v2 - How Much Do You Know About Your Myositis? - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/participating-in-a-research-study monthly 0.5 2025-01-24 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855746650-RCD630Y36ER6XERL75ZL/unnamed.jpeg Blog v2 - What do you know about participating in a research study? - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/thriving-rare monthly 0.5 2025-01-20 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855755153-QIYEOA9UBLK3U20AR85L/IMG_20230626_130740_213.jpg Blog v2 - Thriving Rare - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/share-your-rare-krystel-el-koussa monthly 0.5 2025-01-21 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855762787-Z55N7MDTOOHFH7CAHJCL/IMG_1963.jpg Blog v2 - Share your Rare: Krystel El Koussa - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/the-language-of-rare monthly 0.5 2025-01-16 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855768350-FABIFFIV029F2RMQTA2M/375306-PBRSKN-852.jpg Blog v2 - The Language of Rare - Make it stand out Image by Freepik https://www.knowrare.com/blog-v2/sami monthly 0.5 2025-01-20 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855773357-QEBE075HEKOE3Q2OAN94/KR_BLOG_SPOTLIGHTS.png Blog v2 - Organization Spotlight: SAMi - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855774674-KFJRVJ6I4S2SCMI1TCY7/Untitled%2Bdesign%2B%252828%2529.jpg Blog v2 - Organization Spotlight: SAMi - Make it stand out The Anderson Family https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855776374-K18FILMG0TDJQWA3M6AS/IMG_7506%2B%25281%2529.jpg Blog v2 - Organization Spotlight: SAMi - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855777314-QMNDQHLQS2SA5FM6P8BX/SAMi-1_First%2BSAMi.jpeg Blog v2 - Organization Spotlight: SAMi - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/covid-19-and-myositis monthly 0.5 2025-01-16 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855782638-HP99DKJ9LOJN17E2RIHM/chemist-researcher-doctor-wearing-ppe-equipment-prevent-infection-with-coronavirus-analyzing-virus-sample-using-microscope-working-medical-vaccine-chemistry-laboratory-medicine-concept.jpg Blog v2 - Understanding COVID-19 and Myositis: Key Insights into Muscle Inflammation and Pain - Make it stand out Researcher analyzing virus sample. Image by DCStudio on Freepik https://www.knowrare.com/blog-v2/alice-story monthly 0.5 2025-01-16 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855787829-QM5H6M0GMPNTVJZJM5LF/IMG_20221009_224023391.jpg Blog v2 - Share your Rare: Alice's Story - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855789359-DM6FLJ7WU8CEHK9IA90H/IMG_20221018_181536730.jpg Blog v2 - Share your Rare: Alice's Story - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855790189-NFLE74JMO0M02JFTAT66/IMG_20230220_001225_928.jpg Blog v2 - Share your Rare: Alice's Story - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/cates-formula-for-remission-despite-lifes-stress monthly 0.5 2025-01-27 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855795907-AIY21NPHR31SHXMAR538/Cate%2526Luna2.jpg Blog v2 - A Myasthenia Gravis Health Story: Cate’s formula for remission despite life’s stress - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855797510-DFB1PR5LEE64UR23YMY8/Cate_infusion%252Bpottytraining.jpg Blog v2 - A Myasthenia Gravis Health Story: Cate’s formula for remission despite life’s stress - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/irritability-a-symptom-of-being-a-rare-caregiver monthly 0.5 2025-01-27 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855807293-57P4B5LNQ1KT6B8PRTZA/Screen%2BShot%2B2023-05-10%2Bat%2B12.02.28%2BPM.png Blog v2 - Rare Mom Health Story: Irritability - a Symptom of Being a Rare Caregiver - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/a-certified-caregiving-consultants-reflections-on-journaling monthly 0.5 2025-01-15 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855815409-89AG5SDDI20HVKJ187TJ/6461517.jpg Blog v2 - A Certified Caregiving Consultant’s Reflections on Journaling - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/aiha-diagnosis-and-symptoms monthly 0.5 2025-01-14 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855823317-XV4GD4NM4HMP7LQUER36/unnamed-1.png Blog v2 - Diagnosis and Symptoms of Autoimmune Hemolytic Anemia (AIHA) - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855824680-6J3SL1WRXYPK66QT43QG/aiha Blog v2 - Diagnosis and Symptoms of Autoimmune Hemolytic Anemia (AIHA) - Make it stand out CBC (Complete Blood Count) can reveal anemia https://www.knowrare.com/blog-v2/aiha monthly 0.5 2025-01-02 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735855830276-88I9LUVHG1NNQTYU9GUO/aiha.png Blog v2 - What is Autoimmune Hemolytic Anemia (AIHA)? - 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Tips for Managing a Rare Blistering Disease - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856074868-H6B681L03UW4RB7YBDMS/39b522d7-a273-61cc-4859-b02f7287bf00.jpeg Blog v2 - Tips for Managing a Rare Blistering Disease - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856075806-NS09M6K3ELCHPE3417U0/b7d8ce8c-3a27-9d9f-bdec-f6cbe17df9d4.jpeg Blog v2 - Tips for Managing a Rare Blistering Disease - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856077983-8M7T5BQO3B93BBVUM3A1/c9521273-9d29-3550-256e-570eae45db7d.jpeg Blog v2 - Tips for Managing a Rare Blistering Disease - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/failure-to-thrive monthly 0.5 2025-01-16 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856093192-9ZUYODGIA1M58WN63PZ5/IMG_7421.jpg Blog v2 - Navigating 'Failure to Thrive': A Mother's Journey Through Diagnosis and Decision-Making - Make it stand out Alden’s 1st bday (before surgery) https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856095203-27P88N90R6KVKXDHVVLB/IMG_7533.jpg Blog v2 - Navigating 'Failure to Thrive': A Mother's Journey Through Diagnosis and Decision-Making - Make it stand out Alden, post-surgery (morphine snuggles) https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856096778-HXU57MANFFQOZFCNXPB3/IMG_5442.jpg Blog v2 - Navigating 'Failure to Thrive': A Mother's Journey Through Diagnosis and Decision-Making - Make it stand out Alden at school, Oct 2022 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856097809-ATUS56MCHA8OHE8HO3X6/image4.jpg Blog v2 - Navigating 'Failure to Thrive': A Mother's Journey Through Diagnosis and Decision-Making - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/embrace-your-rare-truth monthly 0.5 2025-01-23 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856104813-043NBNR5USXNFZPNOHED/20220816_104342+%281%29.jpg Blog v2 - Embrace your Rare Truth: Becky's Rare Tip on Finding the Right Support https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856106096-37V9T79C29LZZA2Y5FVC/Becky+Tilley_new+photo.jpg Blog v2 - Embrace your Rare Truth: Becky's Rare Tip on Finding the Right Support https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856109203-I0LDG5TDDUSLSILOY5VZ/20220829_140736.jpg Blog v2 - Embrace your Rare Truth: Becky's Rare Tip on Finding the Right Support https://www.knowrare.com/blog-v2/becky-tilley monthly 0.5 2025-01-16 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856118510-69KHLY929P2JL92Z077C/11.png Blog v2 - Changemaker in Rare: Becky Tilley - Make it stand out Becky Tilley, Rare Woman, Mama, Writer, Author and Rare Disease Advocate living with Koolen de-Vries syndrome. https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856119859-2COYC7NVGIGLF31M8KKC/TheTilleyfamilyphotoshootFebruary2022-267.jpg Blog v2 - Changemaker in Rare: Becky Tilley - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/a-tiger-moms-guide-for-sudden-hospitalization-for-a-child-with-a-rare-disease monthly 0.5 2025-01-20 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856125322-01RIE9XKD28K63Q5TQRP/camilo-jimenez-vGu08RYjO-s-unsplash.jpg Blog v2 - A Tiger Mom’s Guide for Sudden Hospitalization for a Child with a Rare Disease - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/familial-dysautonomia-foundation monthly 0.5 2025-01-23 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856136439-EPUG4ZH5LRNJUHUW65QX/5.png Blog v2 - Organization Spotlight: The Familial Dysautonomia Foundation - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/the-healthy-sibling monthly 0.5 2025-01-16 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856141792-XOBT0LL02HF7QMBBH2PU/IMG_3586.jpg Blog v2 - Supporting Healthy Siblings of Children with Medical Complexities: A Mother's Perspective - Make it stand out Siblings Hadley (on the left) and Alden in a gait trainer (on the right) playing together. https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856143396-K8ACF4HKL1ZD42MUAM41/IMG_4354.jpg Blog v2 - Supporting Healthy Siblings of Children with Medical Complexities: A Mother's Perspective - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/targetcancer-foundations-5-tips-for-caregivers monthly 0.5 2025-01-20 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856152949-0QKKYUAIN7ZXHXJG8IYH/depressed-young-woman-thinking-about-her-problems--UEKT4A6.jpg Blog v2 - TargetCancer Foundation’s 5 Tips for Caregivers - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/what-every-rare-cancer-patient-should-know monthly 0.5 2025-01-20 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856160799-G8UM3INIFURCR0QLFBZQ/istockphoto-1027587952-612x612.jpeg Blog v2 - What Every Rare Cancer Patient Should Know - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/targetcancer-foundation monthly 0.5 2025-01-27 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856165188-YC6A7EA23299SRMG3KCL/6.png Blog v2 - Organization Spotlight: The TargetCancer Foundation - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/traveling-different monthly 0.5 2025-04-08 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856170007-F4Z14KOL2ZNTY9310DLX/cover%2Bimage%2Bfor%2BTD%2B%25282%2529.jpg Blog v2 - "Traveling Different," by Dawn M. Barclay: A New Book for Parents of the Anxious, the Inflexible, and the Neurodiverse - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/a-day-at-a-time-kinya monthly 0.5 2025-01-23 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856175117-17DV5ZVARHKK2S8SH9BL/IMG_20200314_115455_2%2B%25281%2529.jpg Blog v2 - A Day at a Time: Our Journey with Rare Disease and Relentless Seizures - Make it stand out Carolyn Kinya (left), entrepreneur and rare mom, with her son Alvin (right), diagnosed with polymicrogyria (PMG). https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856175954-83PVYBTQ8SWKAT6P1OVB/IMG_20210126_092545.jpg Blog v2 - A Day at a Time: Our Journey with Rare Disease and Relentless Seizures - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856177036-AZVPJ0LPDVUNAPCNGHSX/IMG-20210911-WA0057.jpg Blog v2 - A Day at a Time: Our Journey with Rare Disease and Relentless Seizures - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/in-case-of-emergency-for-someone-with-pa-or-mma monthly 0.5 2025-01-23 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/42e56a70-4772-48db-b2da-935d56dbc910/2209.i121.017.S.m005.c13.isometric+injury+traumatologist.jpg Blog v2 - In Case of Emergency: Unleash the Power in Your Pocket - Make it stand out Image by macrovector on Freepik https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856184240-G4CE1HOHZTHBCK9DLS5P/MED%2BID%2Bart.png Blog v2 - In Case of Emergency: Unleash the Power in Your Pocket - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856185231-NFD4W1DM0WCPJHZXCIWL/cropped%2Bart%2Bof%2Bdoctor.jpg Blog v2 - In Case of Emergency: Unleash the Power in Your Pocket - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856186459-U0GED976O56X4BEEXE3O/cropped%2Bart%2Bof%2Bgroup.jpg Blog v2 - In Case of Emergency: Unleash the Power in Your Pocket - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856187542-L4XRVRVEKLR4GL1OCH8V/password%2Bin%2Bportal.jpg Blog v2 - In Case of Emergency: Unleash the Power in Your Pocket - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/dna-today-propionic-and-methylmalonic-acidemia monthly 0.5 2025-01-14 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856195607-BN05103QLU40X8Q8IOVP/Ep%252B188__.png Blog v2 - DNA Today Podcast: Propionic and Methylmalonic Acidemia with HemoShear Therapeutics - Make it stand out Bryan Kelly who lives with propionic acidemia. and Dr. Pat Horn, Chief Medical Officer at HemoShear. https://www.knowrare.com/blog-v2/protect-yourself-from-the-sun-if-you-have-bp monthly 0.5 2025-01-14 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856204659-P326TY299I36HIR876EF/ultraviolet%2Bradiation%2Bhero%2Bimage.jpg Blog v2 - Protect Yourself From the Sun if You Have Bullous Pemphigoid (BP) - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/genetic-testing-explained-dr-owens monthly 0.5 2025-01-15 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856211856-5LPBBEQWMV3IVS0CEL09/8.png Blog v2 - Genetic Testing Explained: Dr. Joshua Owens is changing the way families think about genetics - Make it stand out Joshua Owens, MD, Clinical Geneticist https://www.knowrare.com/blog-v2/pa-foundation monthly 0.5 2025-01-20 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856217629-7563N46K36ODRI8QZGBQ/7.png Blog v2 - Organization Spotlight: The Propionic Acidemia Foundation - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/i-see-you-dragon-mom monthly 0.5 2025-01-16 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856224386-9DH5MIW3JVZ1HWKH1WRU/istockphoto-1159040738-612x612.jpeg Blog v2 - "I See You, Dragon Mom": A Poetic Tribute to Rare Disease Caregivers - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/strive-to-thrive-not-just-survive monthly 0.5 2025-01-14 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1736859205438-0GGMEG884SA2ZXJNW1OW/unsplash-image-kE0o9syjDZQ.jpg Blog v2 - Strive to Thrive, Not Just Survive - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/share-your-rare-bryan-kelly monthly 0.5 2025-01-17 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856237468-PM7MAS9BEC4QZAV3K8CE/unnamed-2.jpg Blog v2 - Share Your Rare: Bryan Kelly https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856238530-X8K7DKIOERC2ZEUPHY5F/unnamed-3.jpg Blog v2 - Share Your Rare: Bryan Kelly https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856239693-07V20DK8MSS9BTEDW07K/unnamed-21.jpg Blog v2 - Share Your Rare: Bryan Kelly https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856241015-LL17XQR1OULRY03HCONI/unnamed.jpg Blog v2 - Share Your Rare: Bryan Kelly https://www.knowrare.com/blog-v2/changemaker-in-rare-mcintyre monthly 0.5 2025-01-14 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856246235-Q1ZG60CFZFP8BHAZI70O/3.png Blog v2 - Changemaker in Rare: Anne-Marie McIntyre - Make it stand out Anne-Marie McIntyre, Board Certified Behavior Analyst https://www.knowrare.com/blog-v2/can-what-you-eat-trigger-bullous-pemphigoid monthly 0.5 2025-01-17 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856251348-4YF1NHGHEKV830QOC9LA/foodMood-182175784_770x533-650x428.jpeg Blog v2 - Can What You Eat Trigger Bullous Pemphigoid, a Rare Skin Condition? - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/moving-mountains-desenches monthly 0.5 2025-01-17 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856256872-P17RVTS4W56029JYXJBO/unnamed2.jpeg Blog v2 - Moving Mountains: Advocating for My Son’s Individual Education and Health Plans - Make it stand out Samantha’s child, Desmond https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856258368-V4VC426Q5PNL5KTW2IF4/desmond.jpg Blog v2 - Moving Mountains: Advocating for My Son’s Individual Education and Health Plans - Make it stand out Rare mom Samantha and her child snuggling https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856261267-SW7RBZC8P9WS04M0KIOV/Screen+Shot+2022-05-10+at+6.37.22+AM.png Blog v2 - Moving Mountains: Advocating for My Son’s Individual Education and Health Plans https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856263870-XHV7PA7FLMTR65WBWEW4/Screen+Shot+2022-05-10+at+6.37.32+AM.png Blog v2 - Moving Mountains: Advocating for My Son’s Individual Education and Health Plans https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856266389-29SGTYJ86ONGO23HAEIU/Screen+Shot+2022-05-10+at+6.37.43+AM.png Blog v2 - Moving Mountains: Advocating for My Son’s Individual Education and Health Plans https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856268549-ES1VX170726OPQGKHNS0/Screen+Shot+2022-05-10+at+6.37.52+AM.png Blog v2 - Moving Mountains: Advocating for My Son’s Individual Education and Health Plans https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856271166-KY4ZKKJQF974FZRNRUJE/Screen+Shot+2022-05-10+at+6.38.00+AM.png Blog v2 - Moving Mountains: Advocating for My Son’s Individual Education and Health Plans https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856273399-GXI1WAFZQFKDI096HDYI/Screen+Shot+2022-05-10+at+6.38.10+AM.png Blog v2 - Moving Mountains: Advocating for My Son’s Individual Education and Health Plans https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856275363-LN9QAYKPW1CM8OJH4LIV/Screen+Shot+2022-05-10+at+6.38.21+AM.png Blog v2 - Moving Mountains: Advocating for My Son’s Individual Education and Health Plans https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856277811-EMSYBJTP8DV9H7S5NDTL/Screen+Shot+2022-05-10+at+6.38.29+AM.png Blog v2 - Moving Mountains: Advocating for My Son’s Individual Education and Health Plans https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856280709-UYL1539HVX3VXWS00P68/Screen+Shot+2022-05-10+at+6.38.37+AM.png Blog v2 - Moving Mountains: Advocating for My Son’s Individual Education and Health Plans https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856283022-PV912T1X92CLSVR8OVKZ/Screen+Shot+2022-05-10+at+6.38.46+AM.png Blog v2 - Moving Mountains: Advocating for My Son’s Individual Education and Health Plans https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856285349-FLHM67MOLFDKZ4LSQA7E/Screen+Shot+2022-05-10+at+6.38.58+AM.png Blog v2 - Moving Mountains: Advocating for My Son’s Individual Education and Health Plans https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856287738-YFM6C8EKAOW4N7PJ53KI/Screen+Shot+2022-05-10+at+6.39.12+AM.png Blog v2 - Moving Mountains: Advocating for My Son’s Individual Education and Health Plans https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856290407-S623H6BUWMMMC8H5WKGR/Screen+Shot+2022-05-10+at+6.39.20+AM.png Blog v2 - Moving Mountains: Advocating for My Son’s Individual Education and Health Plans https://www.knowrare.com/blog-v2/the-resiliency-toolbox monthly 0.5 2025-01-08 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856296150-PSQ4TCFEVFAAJSXYKKQ1/3.picture%2Bfor%2Bstory_uni_2.jpg Blog v2 - The Rare Resiliency Toolbox - Make it stand out Uni Neha, Rare Disease Advocate https://www.knowrare.com/blog-v2/5-things-to-pack-in-your-emotional-toolkit monthly 0.5 2025-01-17 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856303057-BAPCBLYFXBEY6R5T2SG0/mental-health-concept-vector.jpg Blog v2 - 5 Things to Pack in your Emotional Toolkit - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/dr-pushpa-narayanaswami monthly 0.5 2025-01-16 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856307947-KM8K0H7WCZ2OI0260FMG/10.png Blog v2 - Changemaker in Rare: Pushpa Narayanaswami - Make it stand out Dr. Pushpa Narayanaswami, Neurology Specialist https://www.knowrare.com/blog-v2/measuring-patient-reported-outcomes-in-fsgs monthly 0.5 2025-01-14 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856313121-WTTMA24R9BX8DI6AUELS/4a12b3bbcc373ddfec456a5b6354c7fe%25402x.jpg Blog v2 - Research in Action: Measuring Patient-Reported Outcomes in FSGS - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/2021/2/14/health-history-visualization-tools-help-rare-patients-tell-complex-stories monthly 0.5 2025-01-22 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856321601-P69H95EI4SXY49D2X0R6/katiemccurdy_headshot_1.jpg Blog v2 - Katie McCurdy: How a Woman with MG Helps Rare Patients Tell Complex Stories https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856323846-8I26PNGVZ9WS5V9WSW1A/Health_History_Timeline.png Blog v2 - Katie McCurdy: How a Woman with MG Helps Rare Patients Tell Complex Stories An example of a patient health timeline https://www.knowrare.com/blog-v2/plunging-is-easy-raising-money-is-hard monthly 0.5 2025-01-21 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856332420-JKNKEJE4Z72ZJPAN2BWK/77948849-Money-Jar-Article-600x400%25281%2529.jpg Blog v2 - Plunging is Easy, Raising Money is Hard: Lessons to Help Other Rare Disease Fundraising Organizations - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/jeremy-e-lankford monthly 0.5 2025-01-14 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856338044-H2CF9CLEGF508WNUY288/9.png Blog v2 - Changemaker in Rare: Jeremy E. Lankford, M.D. - Make it stand out Jeremy E. Lankford, M.D., Pediatric Neurologist https://www.knowrare.com/blog-v2/mary-kay-koenig monthly 0.5 2025-01-14 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/eee64886-adbb-4625-a540-b0d6186bee23/5.png Blog v2 - Changemaker in Rare: Mary Kay Koenig, M.D. - Make it stand out Mary Kay Koenig, M.D., Pediatric Neurologist https://www.knowrare.com/blog-v2/bob-coughlin monthly 0.5 2025-01-16 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/ec061bda-2088-4245-bf07-c3f780c99e0b/Copy+of+Your+paragraph+text+%281%29.png Blog v2 - Bob Coughlin: Boldly Chasing Cures - Make it stand out Bob Coughlin, Managing Director JLL, former MassBio CEO, and Cystic Fibrosis Dad and Advocate, with his sons. https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/24f809e1-c47a-41ea-853b-663ba3ae5319/cffishing+%281%29+%281%29.jpg Blog v2 - Bob Coughlin: Boldly Chasing Cures - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/kimberly-chapman monthly 0.5 2025-01-08 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856358523-ABGT2PDHZA6I4K5DIF0T/7.png Blog v2 - Changemaker in Propionic and Methylmalonic Acidemia: Kimberly Chapman, MD, PhD - Make it stand out Dr. Kimberly Chapman, Medical Geneticist https://www.knowrare.com/blog-v2/a-rare-disease-true-crime-story monthly 0.5 2025-01-17 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856363517-UT1YI7SI9LRMAP08VSOR/istockphoto-121586241-170667a.jpeg Blog v2 - A Rare Disease True Crime Story - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/a-case-for-more-laughter monthly 0.5 2025-01-15 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856370819-U671WO7HHN03NRGZU9TQ/IMG-8604%2B%25281%2529.jpg Blog v2 - A Case for More Laughter: Humor as a Part of Seriously Good Caretaking - Make it stand out 1, 2, 3, BLINK! 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See What the Research Says - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/can-yoga-really-help-with-igan monthly 0.5 2025-05-01 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856441960-IIQUTKCOCCCSKAI5155Z/istockphoto-1166417394-612x612.jpg Blog v2 - Can Yoga Really Help with IgAN? See What the Research Says - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/the-genesis-foundation-for-children monthly 0.5 2025-01-27 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856449093-F7OVX2DY0W5DB03AYE4F/9.png Blog v2 - Organization Spotlight: The Genesis Foundation for Children - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/living-with-fsgs monthly 0.5 2025-01-16 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/3c5a93ee-031f-45fe-bb06-324ba78adde2/Johnathan+LaGrande-3.jpg Blog v2 - Living with FSGS - Make it stand out Johnathan Grande, FSGS Warrior https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/8c8d4834-8fdc-4176-bf77-68ae9e0cae18/football+player-cropped.jpg Blog v2 - Living with FSGS - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/7d213035-550f-4f21-83f4-f29b12ff258a/blood+vials.png Blog v2 - Living with FSGS - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/446e7255-15ed-4b4a-9711-38a3ed19e87c/close+up+of+hand-hold.png Blog v2 - Living with FSGS - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/gaining-control-with-gratitude monthly 0.5 2025-01-15 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856495632-88A63A59Z2JFRP0E8GIV/24683338648_a02e9f2f1f_c.jpg Blog v2 - Gaining Control with Gratitude - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/four-things-to-know-about-rare-disease-patient-registries monthly 0.5 2025-01-14 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856500137-KDTQC3B4KOAPDV0JZMAA/patient-registration-1536x1024.jpg Blog v2 - Four Things to Know About Rare Disease Patient Registries - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/one-bad-take-a-daily-newspaper-misses-the-target-on-pre-natal-testing monthly 0.5 2025-01-27 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856508140-K0IO97YPAO7AJU7D3SDL/Capture.JPG Blog v2 - One Bad Take: A Daily Newspaper Misses the Target on Prenatal Testing - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/pmg-awareness monthly 0.5 2025-01-27 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856512812-0PX2TT7J27RTXF033H4F/10.png Blog v2 - Organization Spotlight: The PMG Awareness Organization - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/unleashing-the-power-of-self-compassion monthly 0.5 2025-01-15 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856519594-8N0DHKIPOP2PITF2DGHK/new-years-resolution-1024x768.jpeg Blog v2 - 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Organization Spotlight: The National Society of Genetic Counselors - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/5-ways-employers-can-support-rare-disease-caregivers-in-the-workplace monthly 0.5 2025-01-20 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856544399-NAMU7IM03YFV0H5M71JI/5f3a8f12e89ebf001f0452ca.jpg Blog v2 - 5 Ways Employers Can Support Rare Disease Caregivers in the Workplace - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/uthealth-ctpnd monthly 0.5 2025-01-17 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856549030-0LQVCE4XHHK94VDZQRP1/UTHealth+Logo.png Blog v2 - Organization Spotlight: University of Texas Center for the Treatment of Pediatric Neurodegenerative Disease - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856550959-7BKEZG2YNKK14FY9I6R3/Mary%252BKay%252BKoenig.jpg Blog v2 - Organization Spotlight: University of Texas Center for the Treatment of Pediatric Neurodegenerative Disease - Mary Kay Koenig, MD Read Bio https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856552524-3TP0O46ACT8J7PUT6LKW/S_Nick_Russo.jpg Blog v2 - Organization Spotlight: University of Texas Center for the Treatment of Pediatric Neurodegenerative Disease - Sam N. 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Organization Spotlight: The National Alliance for Caregiving (NAC) - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/nac-and-global-genes-caregiverguide monthly 0.5 2025-01-02 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856614965-8KH34OPZA7WUAUIHC7X6/NAC_RareCaregivers_Guidebook_FINAL.jpeg Blog v2 - NAC and Global Genes Publish New Guidebook for Caregivers of Children with Rare Illnesses - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/booksforfamilies monthly 0.5 2025-08-14 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856624162-C8GQ3K1N5HBIT7M385M7/Breathe+Like+a+Bear.jpeg Blog v2 - 10 Books for Families of Children with Rare Disease https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856625241-YQV6YPIB9FRH0Y7ADDZC/Don%E2%80%99t+Call+Me+Special-+a+First+Look+at+Disability+.jpeg Blog v2 - 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Empowering and imaginative, this book makes all the equipment super cool. https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856621692-NAVM9A22VGG1QYHCS3XK/IMG_1403.jpg Blog v2 - 10 Books for Families of Children with Rare Disease - Make it stand out Laura reading with her two children Alden and Hadley https://www.knowrare.com/blog-v2/mgnet monthly 0.5 2025-01-20 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856644566-6IBG15PZPRRHBWRUKNIA/16.png Blog v2 - Organization Spotlight: Myasthenia Gravis Rare Disease Network (MGNet) - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/complicatedgrief monthly 0.5 2025-01-20 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856649851-DMPSYV1U06XZIL1I5HGU/Gina%2Bwagner%2Bphoto%2Bwith%2Bbrother.jpg Blog v2 - The Complicated Grief of Losing Someone with a Rare Disease - Make it stand out Gina D. Wagner with her brother, Alan https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856651118-LKBHEMA35VT84WXIUNI3/GDW%2Bheadshot.jpg Blog v2 - The Complicated Grief of Losing Someone with a Rare Disease - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowrare.com/blog-v2/gina-wagner-what-i-wish-i-knew monthly 0.5 2025-01-20 https://images.squarespace-cdn.com/content/v1/677632b73bf4495468246e2e/1735856657215-AKFK4SED69SH69YTLDO9/IMG_6582.JPG Blog v2 - What I Wish I'd Known About Prader-Willi Syndrome - Make it stand out The author, Gina D. 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