Connect
Connect with like-minded patients and advocates across the globe
Engage with members of your disease community, share resources and get involved.
Join Our Community
Connect and engage with others like you through discussions. Would you like an invitation to join our new RARE Portal community?
Join Our CommunityRare Concierge
Try our free one-on-one service for patients looking for information and resources on their rare disease.
Get Personalized SupportGlobal Advocacy Alliance
Our partners include nonprofit, government, academic, research, service, and industry organizations that believe collaboration is the key to positive change. Join us.
Rare Corporate Alliance
We are a coalition of rare disease industry stakeholders committed to collaboration between industry and patient communities to improve and expedite access to effective therapies for all rare patients.
Upcoming Community Events
Supporting Siblings’ Financial Planning in Adulthood – Pediatric Epilepsy Surgery Alliance
September 12, 2024
Virtual
DetailsAutoimmune Network Monthly Webinar
September 19, 2024
Virtual
Details9th Annual #CaringForRare Cycling Event
September 22, 2024
Virtual
DetailsRare Surfs
September 22, 2024
Array
DetailsChoroideremia Research Foundation International Regional Patient Meeting!
October 12, 2024
Array
DetailsRare Neuroimmune Disorders Symposium (RNDS)
October 18, 2024 – October 20, 2024
DetailsRare Neuroimmune Disorders Symposium (RNDS)
October 18, 2024 – October 20, 2024
Details2024 IPPF Patient Education Conference
October 26, 2024 – October 27, 2024
Array
DetailsALSP Run & Roll 5K for the Cure
November 2, 2024
Array
DetailsCommunity Highlights
Stay Connected
Sign up for updates straight to your inbox.