The Global Rare Disease Support Network
Know Rare provides access to support, tools, and knowledge from the top leaders and researchers in rare disease.
FEATURED IN
How We Help
We provide support, apps, and information to improve your rare disease journey.
Rare Research Finder
Get help finding & connecting with rare disease medical centers & clinical trials.
Rare Journaling App
Our new ‘Healthstory AI’ app helps you journal and see insights on daily life.
Rare Disease Blog
Learn and get resources from experts, caregivers, and others like you.
About Our Support Network
Helping connect the people, researchers and communities in rare disease
+25,000
Rare Disease Members
+300
Medical Centers Worldwide
50+
Patient Organizations
After my son’s diagnosis, I had so many questions and didn’t know where to turn for answers. Know Rare provided incredible support by connecting us to the right specialists. Can’t thank them enough for giving us hope for the future!
Fran, Mom of Diego
Diagnosed with Propionic Acidemia
Meet Our Support Team
Our team of dedicated nurses are here to guide families to doctors, medical centers, and vital clinical trials, offering them guidance, solace, and support along the way.
In need of care and support?
Christine Kim
Before joining Know Rare, I worked in research coordination for qualitative studies and built a strong background in compliance and ethics within clinical trial management. Driven by a passion for advocating for patient rights, especially for those with rare diseases, I have successfully connected patients to clinical trials as a Patient Support and Recruitment Manager. My goal is to continue bridging patients with research opportunities that suit their needs, fostering clinical trials that are more inclusive, efficient, and patient-centered.
Andreya Fletcher
I’m formerly a nursing assistant who is personally connected to rare disease as my mom is diagnosed with Glanzmann Thrombasthenia which is a rare blood clotting disorder. Through learning from my mother’s experiences and supporting her in her journey, I understand how scary it can be to live with a rare disease. My personal experience combined with my professional experience as a nursing assistant has given me the skills and insight needed to help people affected by rare diseases.
Download the Ultimate Rare Journaling App
Introducing Health Story AI, an app thats personalized to you, making it easier than ever to capture and share each persons unique daily challenges of living with a rare disease.
Journal with Voice
Just talk and we’ll automatically turns what you say into text, letting you easily read your journal entries anytime
View Insights
Get personalized easy-to-read insights based on the patterns, trends, and themes in your various journal entries
Share Securely
Feel confident about sharing your journal with family, friends, and more, utilizing our advanced privacy controls
Download now to tap into the healing power of journaling
RARE RESILIENCY
CHANGEMAKERS IN RARE
Latest From Our Blog
Read the journeys of people who live every day with a rare disease, and learn about the new research and researchers working to create a better future.
Latest Press
Get in Touch
Reach out now to let us know how we can help you