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AWARENESS
We shine a light on rare genetic heart disorders by educating medical professionals, patients, families, and the public. Through outreach, education, storytelling, and advocacy, we bring these often-hidden risks into focus, helping more people recognize the signs, understand genetic testing options, and act early.
ACTION
We turn awareness into action by supporting research, advancing education, connecting patients and researchers, and advocating for earlier diagnosis and better care. Your support helps accelerate PPA2 research, strengthen the patient community, and create meaningful progress for families affected by ultra-rare genetic heart disorders.
About Us
RareDNA Foundation is a nonprofit organization dedicated to improving outcomes for individuals and families affected by rare genetic heart disorders. Born from one family’s journey and one powerful mission, our work turns awareness into action, by building Awareness so these often-hidden conditions are recognized sooner, expanding Access to genetic testing, specialized care, education, and research opportunities, and inspiring Action to accelerate research, diagnosis, and progress for patients and families.
Our team is passionate about creating meaningful change through collaboration, by bringing together patients and families, researchers, healthcare professionals, and advocates to advance understanding and discovery. Guided by real stories like Claire’s, we connect science, lived experience, and compassion to build a future where families have the knowledge, connections, care, and time they need.
Together, we can turn rare into recognized and recognition into action.