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General communications

Rare EDS deserves its own voice. The Collagen Advocacy Network (CAN) is an all-volunteer 501(c)(3) for people with molecularly confirmed rare types of Ehlers-Danlos syndrome.These are genetic conditions with a known cause, but they get very little research funding or public attention. CAN was founded by patients to change that. What your gift supports:<ol><li>Our Stories, Our Strands. This is our first conference dedicated to the monogenic EDS types. It takes place May 22–23, 2027, in Ann Arbor, Michigan, and will be hybrid so patients can join in person or from home. One of our top priorities is funding scholarships so patients can attend in person and connect with others who share their rare type!</li><li>Patient-driven research. We partner with researchers on surveys of genetically confirmed patients, so the questions science asks reflect what patients actually live with.</li><li>Building the infrastructure rare EDS lacks. This includes vetted provider resources and the groundwork for a patient registry.</li></ol>We have no paid staff, so your donation goes directly to this work.Other ways to help: Share this page with anyone touched by rare EDS. Every share helps another patient find a community that understands them.Thank you for standing with us.

Collagen Advocacy Network

Collagen Advocacy Network

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