PLN Genetic Mutation Awareness
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22/04/2026
https://secure.4hcm.org/np/clients/4hcm/event.jsp?forwardedFromSecureDomain=1&event=4537
The Genetic Cardiomyopathy Awareness Consortium worked with the Hypertrophic Cardiomyopathy Association (HCMA) on a patient survey to help make the Food and Drug Administration (FDA) better aware of all types of cardiomyopathy and the lived patient experience.
This Externally Led Patient-Focused Drug Development (EL-PFDD) initiative aims to provide a focused understanding of genetic cardiomyopathies—their burdens, their impact on daily life, and patient perspectives on current and emerging treatments, including advanced genetically based therapies.
Join us on April 23 for a webinar. The free event will bring the patient experience directly into research and FDA discussions.
👉 Register for the webinar
Thank you for helping ensure that patient voices are heard.
Externally-Led Patient Focused Drug Development Meeting Your Bighearted patient experience will convey the importance and urgency of new therapies to the Food & Drug Administration (FDA), researchers, pharma, healthcare providers, and federal regulators, leveraging the unique power of your lived experience.
February is American Heart Month ❤️
A time to raise awareness, honor the journeys of those living with heart disease, remember the lives impacted, and stand together in support of families, survivors, and those we’ve lost.
Heart disease doesn’t always look the same. It affects people of every age, every background, and every story. For some, it means daily medications and monitoring. For others, it means genetic testing, lifestyle changes, procedures, or learning to live with the unknown. And for many, it means loving and supporting someone who carries this diagnosis.
This month is about education, early detection, advocacy, and community. It’s about reminding each other to listen to our bodies, learn our family history, prioritize our health, and check in on the people we love.
To everyone living with heart disease: you are strong, you are seen, and you are not alone. đź«€
We stand with you this month and every month
