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 Support
Global 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
Narcolepsy Network 37th Annual Conference
September 29, 2023 – October 1, 2023
Array
DetailsChoroideremia Research Foundation Western US Regional Meeting
September 30, 2023
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DetailsPFIC Awareness Day
October 5, 2023
Virtual
Details2023 Regional Rare Neuroimmune Disorders Symposium
October 7, 2023
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DetailsHyperoxaluria Patient & Family Summit
October 7, 2023
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DetailsIndo US Bridging RARE Summit 2023
October 29, 2023 – October 30, 2023
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DetailsCureDuchenne FUTURES 2024 Annual Conference
May 23, 2024 – May 26, 2024
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DetailsCommunity Highlights

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