Rare Disease Organizations
Home of the Rare Disease Database, NORD is where the intersection of care, research, policy and community for all rare diseases meet
A 501(c)(3) nonprofit, nonpartisan organization dedicated to empowering the Rare Disease Community to advocate on behalf of legislation that has the power to advance the access of lifesaving diagnoses, treatments and cures
An organization that is committed to providing information, resources and connections to all communities affected by rare diseases
Founded through the Black Women's Health Imperative, the Coalition serves as a safe place for rare disease experts, advocates and industry leaders to work towards reducing health disparities especially those that disproportionately affect marginalized populations
Global alliance of people living with rare diseases advocating on behalf of rare disease global health policy and connecting patient communities
A community-based grassroots-led platform committed to transformative connection, advocacy and truth-telling for 2SLGBTQIA+ rare disease communities
A global nonprofit organization dedicated to autoimmune disease advocacy, awareness, education and research
An organization focusing on providing resources and support for the Undiagnosed/Ultra-Rare Disease Community
South Carolina Specific Organizations/Chapters
National Disease-Specific Organizations
Included below are names and links to a few well-known national disease-specific organizations that may be helpful. There are thousands more organizations that exist within the Rare Disease Space. More information can be found here