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Share your experiences through articles, videos or events and help improve understanding of rare diseases.
Share your experiences through articles, videos or events and help improve understanding of rare diseases.
Access FREE live webinars from specialists and leaders across the rare disease community.
Connect with others who understand what you are going through. You are not alone.
Join our Lived Experience Directory and opportunities such as surveys, focus groups and research studies.
Work with researchers, universities, charities and companies to improve treatments and care.
Receive regular updates on research news, clinical trials, events, patient opportunities and new resources.
You choose what information you share, who can contact you and which opportunities you accept.
Become part of an international network working together to improve the lives of people affected by rare diseases.