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 750 rare disease organizations and members 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.

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Welcome New Members!

Living in the Light, CHOPS SYNDROME FOUNDATION, The Champ Foundation, Dravet Syndrome Foundation Spain, Genèsic Nonprofit Organization, Incorporated, Pompe Alliance, Brandon’s Battle Foundation For SKS Kids, The Dent Disease Foundation, Facial Pain Association, Love Never Sinks, Pathways To Trust, VHL Alliance, Endosalpingiosis Foundation Inc, Muscular Dystrophy Family Foundation, DDX3X Foundation, ALS Ride For Life

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.

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.