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Hosted by trusted patient advocates, this is a place where rare disease patients can connect with others globally. Come in and learn more >

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Our Communities

Our Communities

Find an online community for your area of interest. Meet, interact and learn from your peers and medical experts. We have 76 rare disease communities with more to come soon!

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Join RareConnect

Join RareConnect

Meet and interact with others who share your condition in a supportive and friendly environment. Find the information and support you need and share your own experiences.

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Member Story

Read Raya's Story

Raya's Story - We are the parents to two children. Our three year old daughter Raya was diagnosed... Read more >

Events

  • Second World Conference on Congenital Disorders of Glycosylation (CDG) for Families and Professionals Second World Conference on Congenital Disorders of Gl... More >
  • Dysmelia Experts' Forum Conference Dysmelia Experts' Forum Conference - We have ple... More >
  • 3rd Annual International Erdheim-Chester Disease Patient and Family Gathering 3rd Annual International Erdheim-Chester Disease Pati... More >