Welcome!

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

Join Now It’s Free!

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 75 rare disease communities with more to come soon!

Select your community

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.

Join now

Member Story

Read The start of a new life

The start of a new life - I think porphyria began in adolescence but I was not diagnosed at the time. My... Read more >

Events

  • 3rd Annual International Erdheim-Chester Disease Patient and Family Gathering 3rd Annual International Erdheim-Chester Disease Pati... More >
  • International Conference “Sanfilippo Syndrome and Related Lysosomal Storage Diseases International Conference “Sanfilippo Syndrome and R... More >
  • 2nd World Conference on Congenital Disorders of Glycosylation for Families and Professionals 2nd World Conference on Congenital Disorders of Glyco... More >