Our Partnerships

We work with many partner organizations to provide allow our voices to be heard.

Our partnerships support our mission to serve the Danon community — we are a U.S. based organization, but we are committed to supporting people all over the world that live with Danon disease.

The RARE Foundation

The RARE Foundation is a community of relentless advocates working to improve the quality of life for all people living with rare diseases. We raise our voices and leverage robust, science-based evidence to accelerate equitable treatments and diagnosis.

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Global Genes

We are proud to be a member of the Global Advocacy Alliance! The mission of Global Genes is to connect, empower and inspire the rare disease community. Among other things, Global Genes hosts an annual Rare Patient Advocacy Summit, which brings the rare disease community together.  It’s a tremendous event that inspires hope and builds community.

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NORD

The National Organization for Rare Disorders (NORD®) was founded after the passage of the Orphan Drug Act of 1983 (ODA) to formalize the coalition of patient advocacy groups that were instrumental in passing that landmark law. Since then, NORD has been helping those who battle and care for people with rare diseases feel seen, heard, supported, and connected.

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EURORDIS – Rare Diseases Europe

The Danon Foundation is a proud associate member of EURORDIS – Rare Diseases Europe, a unique, non-profit alliance of over 1,000 rare disease patient organisations from 77 countries that work together to improve the lives of over 30 million people living with a rare disease in Europe.

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Rare Diseases International

Rare Diseases International (RDI) is the global alliance of people living with a rare disease of all nationalities across all rare diseases. RDI’s mission is to be a strong common voice on behalf of PLWRD around the world, to advocate for rare diseases as an international public health priority and to represent its members and enhance their capacities. RDI has more than 100 member organizations from 48 countries, that in turn represent rare disease advocacy groups in more than 150 countries worldwide.

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Global Heart Hub

The Danon Foundation is proud to be an affiliate of the Global Heart Hub. Global Heart Hub is the first global non-profit umbrella organisation of patient organisations and patient advocates to provide a voice for those living with or affected by cardiovascular disease.

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Alliance for Regenerative Medicine

ARM unites the cell and gene therapy ecosystem to modernize healthcare systems, overcome obstacles to innovation, and improve patient access to life-changing treatments.

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Genetic Cardiomyopathy Awareness Consortium

In 2023, the Genetic Cardiomyopathy Awareness Campaign and Consortium (“GCAC”) was launched by the DCM Foundation along with all major cardiomyopathy patient groups, and eight biopharma companies.

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Hypertrophic Cardiomyopathy Association

HCMA provides support, advocacy, and education to patients, families, the medical community, and the public about hypertrophic cardiomyopathy while supporting research and fostering the development of treatments.

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