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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
Informa Connect Rare Disease Summit
March 19, 2024 – March 21, 2024
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DetailsWake Up Narcolepsy 2024 National Summit
April 27, 2024
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DetailsCureDuchenne FUTURES 2024 Annual Conference
May 23, 2024 – May 26, 2024
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Details39th Annual HDSA Convention
May 30, 2024 – June 1, 2024
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DetailsImmune Deficiency Foundation 2024 PI Conference
June 20, 2024 – June 22, 2024
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DetailsThe Global Cell & Gene Therapy Summit
July 8, 2024 – July 10, 2024
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DetailsCommunity Highlights
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