Join other families with rare conditions to share support and collaborate on research.
Get introduced to those who share your situation from location and culture to patient age, and more. Call or message, 1-on-1 or in groups, using personal privacy settings.
Get to know academic and industry experts working on rare diseases. Ask questions, share your experiences, and co-design new projects.
Start, manage, or grow your community with features designed just for you including automatic group moderation, real-time translation, and feed search.
We're building on our Chief Rare Mom's viral rare disease and disability resource guide to introduce a brand new interface, crowdsourcing, and more features to come.
We write about topics ranging from caregiving finances to caregivers in media. We'll post updates about us too. Stay up-to-date here!Find us on all your socials below - we'd love to hear from you 😊