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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.
Our Upcoming Events
Upcoming Community Events
Frontiers in Pediatric Genomic Medicine Conference
May 1, 2024 – May 2, 2024
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DetailsMyositis Moon Walk
May 4, 2024
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Details6th International Conference on Cardiomyopathy in Children
May 10, 2024 – May 11, 2024
Virtual
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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DetailsCMT Clinical Trial Readiness Summit
June 7, 2024 – June 8, 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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DetailsPRISMS Leads the Way To Support Those Living with Smith-Magenis Syndrome at 12th International Conference
July 11, 2024 – July 14, 2024
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DetailsCommunity Highlights
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