We are a global community changing the way the world tackles rare disease. Our partners include nonprofit, government, academic, research, service and industry organizations that believe collaboration is the key to positive change.

Partner with us. Together, we can connect, empower and inspire the rare disease community. 

The Global Genes RARE Foundation Alliance is a coalition of more than 600 rare disease organizations that believe in the power of collective impact and understand that together, we are more powerful.

Foundation Alliance membership provides networking opportunities and effective strategies, tools and resources to help build a foundation’s capacity. Foundation Alliance partners collaborate and exchange best practices to drive better outcomes for the rare disease community.

Welcome New Members!

Encephalitis SocietyCook for LoveThe Cure Blau Syndrome FoundationIRF2BPL Foundation, Blind Children’s Learning Center, Breathe Support Network, Kruzn for a Kure Foundation, Patient Advocate FoundationCDH International, CTNNB1 Syndrome Awareness WorldwideJain FoundationSt. Joseph’s Children’s Hospital, New Jersey

View the full list of RARE Foundation Alliance members.

To be eligible to join the Foundation Alliance, you must be a support group, U.S. Foundation with 501(c)(3) status or international foundation and be able to provide access to information through a website or active Facebook page, offering rare disease information or support in one or more of the following ways: patient /caregiver support, healthcare provider education, public awareness and advocacy and/or research.

Join Us Today


The RARE Foundation Alliance In-Person Meeting will be held in conjunction with the RARE Patient Advocacy Summit. This meeting is reserved for Foundation Alliance members and invitation only. Contact us to learn more about becoming a RARE Foundation Alliance member.

Foundation Alliance In-Person Meeting | September 21, 2019

21sep8:30 am9:00 amNetworking Breakfast

21sep9:00 am10:00 amCase Studies: Ask the Panel and Participants

21sep10:00 am10:15 amTransition/Coffee & Snack

21sep10:15 am11:00 amTopic Specific Roundtable Discussions and Q&A

21sep11:00 am12:00 pmCell and Gene Medicine Educational Resources

RARE Foundation Alliance Leadership Council

The Foundation Alliance Leadership Council works directly with Global Genes to strategically advise on matters of the Foundation Alliance. This group of rare disease advocacy leaders has been identified as some of the community’s most trusted advisors. The leadership council identifies and recommends Alliance goals and priorities and takes an active role in implementing those goals and objectives.