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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?

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Rare Concierge

Try our free one-on-one service for patients looking for information and resources on their rare disease.

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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.  

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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. 

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Our Upcoming Events

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Upcoming Community Events

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Community Highlights

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