Resources & Links
You can discover more information about rare diseases by exploring our suggested resources and links. If you have a resource that you would like to share, please send an email to Jessy@ZebraMedic.com.
The Ehlers-Danlos Society is dedicated to advancing and accelerating research and education in Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). We support the development of effective and equitable EDS and HSD therapies and work collaboratively to improve the lives of individuals affected by EDS and HSD.
Since 1983, NORD has been a national steward and a steadfast partner helping those who battle and care for rare disease feel seen, heard, supported and connected. We’re a full-service, mission-driven nonprofit reimagining a future where every person with a rare disease, and their families live their best lives.
Rare Diseases Clinical Research Network (RDCRN) is an initiative of the Division of Rare Diseases Research Innovation (DRDRI) within the National Institutes of Health's National Center for Advancing Translational Sciences (NCATS). We are funded by NCATS and collaborating institutes and centers.
The Rare Advocacy Movement (RAM) is the first community-based network dedicated to protecting the interests of the global community of people living with rare conditions, chronic & progressive disabilities, medical complexities and their families. RAM represents a unified rare disease patient and carer ecosystem that works through specialized collaborations, across the globe, to address the mutual needs of the patient and carer community, from the community-based perspective.
The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit, nonpartisan organization dedicated to empowering the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments and cures.