Needle Phobia in Children: What It Is, What It Isn’t, and How to Help
Get the basics on needle anxiety, one of the top medical fears among children, and discover tips to manage it.
The Link Between Oral Wellness and Your Overall Health
On World Oral Health Day (March 20), we’re taking a closer look at what your oral health can tell you about your well-being.
All Good Things
Author Erin Paterson talks about Huntington’s Disease, family planning, and the healing power of sharing your story.
What to Know About Observational Studies — and Why They May Be Right for You
Breaking down the differences between observational studies and clinical studies for drug research.
Visiting the Disease: Orit’s Story
Orit recently joined the Know Rare business development team with the goal of helping other caregivers and patients learn more about how to engage with clinical studies and other opportunities for support. Here’s how she is reframing attitudes towards life with a rare condition.
Organización destacada: Trial Equity
Foco en Trial Equity, una organización cuya misión es abordar la infrarrepresentación de diversos grupos de población en los ensayos clínicos, con el objetivo último de promover la equidad en la salud.
National Tay-Sachs & Allied Diseases Association Hosts First of Its Kind Drug Development Meeting for GM2
The National Tay-Sachs & Allied Diseases Association (NTSAD), leader in the worldwide fight to treat and cure Tay-Sachs, Canavan, GM1 and Sandhoff diseases, is hosting the first-ever, ExternallyLed Patient-Focused Drug Development Meeting for GM2 gangliosidoses (Tay-Sachs and Sandhoff diseases) on Thursday, February 15, 2024.
Four Empowering Ways to Mark Rare Disease Month
As we step into Rare Disease Month this February, it's an opportune time to celebrate resilience, foster connection, and empower ourselves within the rare disease community.
Embrace the Ask: How to Seek The Support You Need
In his last post, author Chris Anselmo explored why it’s so hard to ask for help. Now, he shares his tips for how to do it with confidence.
Teens, Substance Use, and Rare Disease
An expert on adolescent health shares tips for families navigating substance use concerns alongside rare disease.
Rare Disease News Roundup
As we head into 2024, we’ve taken a moment to look back at some of the latest headlines in rare disease from the last year.
Why Is It So Hard to Ask for Help?
Hello, Adversity author Chris Anselmo delves into the common obstacles that make seeking help challenging, particularly for many people living with rare disease, and the transformative power of overcoming those mental blocks.
Edgewise Therapeutics: New Treatments for Duchenne and Becker Muscular Dystrophy
Edgewise’s investigational drug is a pioneering treatment for Duchenne and Becker muscular dystrophies.
Safeguard Your Holidays: The Importance of Flu Protection
It’s National Influenza Vaccination Week: find out why the flu vaccine should be a critical part of your winter to-do list.
Avery's Remarkable Rare Path: A One-in-a-Million Diagnostic Journey
Caitlin Eppes shares the inspiring story of The Avery Project, an initiative named after her daughter and dedicated to research of her rare genetic variant, and discusses how her family defied one-in-a-million odds to find a breakthrough in their diagnostic journey.
Anxiety: The Unwelcome Visitor
How writer Chris Anselmo confronts one of the most challenging yet persistent aspects of living with rare disease.
Have A Goal To Taper Off Your Use Of Steroids? Many Clinical Studies For New Drugs Share The Same Mission
Ongoing clinical trials are paving the way for reducing steroid dependency and improving treatment options for various medical conditions.
Embarazada tras una enfermedad rara: Semana 30
A medida que se acerca una fecha clave para el diagnóstico, una madre de un niño con una enfermedad rara reflexiona sobre las complejas emociones asociadas al embarazo.
From Medical Advisor to Fundraiser: A Mom and Know Rare Team Member Helps the Hospital that Helped Her
Know Rare's Medical Advisor, led the Mass General for Children’s Storybook Ball, raising $1.9 million for innovative healthcare and research, while sharing her own personal rare disease journey, and highlighting Know Rare's mission to connect and empower individuals living with rare conditions.
Expert Advice on Managing Nutrition for Rare Disease Patients: Insights from a Metabolic Dietitian
Special diets can be a challenging but necessary part of rare disease treatment. Here, a leading dietician offers advice for supporting nutrition from birth through adulthood.