Back to posts The Genetics Podcast – Ep 259: The Patient Community Driving Awareness and Research for Danon Disease

Our Co-Founder and President, Jenny Hsieh, recently joined host Patrick Short on The Genetics Podcast, presented by Sano Genetics, for a wide-ranging conversation about Danon disease. Together, they explored the science behind Danon, the challenges of diagnosis, and an often-overlooked part of the story: what Danon looks like for women.

Danon disease affects both males and females, but women’s experiences are often less understood. About half of our community is female, and women can develop severe heart disease too, with heart transplant rates similar to males. Yet women’s cardiac symptoms are frequently dismissed, sometimes misdiagnosed as anxiety. Many women are only diagnosed after their child is, through genetic testing.

Jenny also discussed why Danon is so often missed. Because it affects many parts of the body, including the heart, eyes, and muscles, the full picture can be hard to see when each symptom is treated on its own.

The conversation also covered what families need from research and clinical trials, from clearer consent processes to reducing the practical burdens of participation, and the hope that current gene therapy research brings to our community.

A fitting lead-in to Danon Awareness Day

The episode arrives just ahead of the first-ever Danon Awareness Day on October 24. We chose the date as a nod to the location of the LAMP2 gene on the X chromosome: Xq24. Visit our Danon Awareness Day page to download our toolkit and help the world See, Know & Understand Danon.

🎧 Listen to the episode: The Genetics Podcast Episode 259
📖 Read the podcast recap: Why women with Danon disease are being missed