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AWARENESS
We shine a light on rare DNA heart mutations by educating medical professionals, families, and the public. Through outreach, storytelling, and advocacy, we bring these hidden risks into focus—helping more people recognize the signs, understand testing options, and act early. Because awareness saves lives.
ACCESS
We are committed to funding groundbreaking research to advance the understanding and treatment of rare genetic heart disorders. We work to expand access to genetic testing, diagnosis, and specialized care—connecting patients and providers with the information and resources they need when every moment matters.
ACTION
Your support fuels progress. By funding research, driving advocacy, and expanding newborn screening initiatives, we turn awareness into measurable action—bringing hope and better outcomes to families facing rare heart genetic disorders. Together, every contribution helps save lives, empower families, and drive meaningful research in the rare genetics community.
About Us
RareDNA Foundation is a nonprofit organization dedicated to improving outcomes for individuals and families affected by rare genetic heart mutations. Born from one family’s journey and one powerful mission, our work turns awareness into action — building Awareness so these invisible conditions are recognized sooner, Access so every patient and family can reach the testing, care, and support they deserve, and Action so progress in research, diagnosis, and newborn screening happens faster.
Our team is passionate about making a meaningful impact through collaboration — uniting researchers, healthcare professionals, and patient advocates to drive discovery and deliver hope. Guided by real stories like Claire’s, we connect science and compassion to create a brighter future where every family has the knowledge, care, and time they need — because every moment matters.