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Welcome to 2022 everyone! Last year was a difficult year as we continued to navigate Danon Disease through the COVID-19 pandemic. We hope that this year brings good health and happiness. What are you looking forward to this year?
We are excited to continue building our community and would love your input. What would you like to see from us in 2022? We want to hear from you!
Meet the Danon Disease Foundation Team!
Our founders, Kim, Amy and Jenny, started on this journey to create the Danon Disease Foundation in hopes of building a better tomorrow with this rare disease.
Despite the COVID-19 pandemic, it was critical for us to move forward, and we have many individuals and organizations to thank for their commitment and support. We are grateful for this community.
Our mission is to boldly empower people living with Danon Disease, providing trusted information, resources and support to help navigate life, from diagnosis to treatment.
We are excited for this year and hope you will join us. More to come!
Knowledge Today. Hope for Tomorrow.
Did you know that Danon Disease is a rare, genetic condition characterized by a mutation or deletion of the LAMP2 (short for lysosome-associated membrane protein 2) gene located on the X-chromosome?
It can be either inherited from a parent with the condition or can occur as a new genetic change (‘de novo’). While Danon Disease was first described almost 30 years ago, it is still not well understood. Less than 200 people with Danon Disease have been described in the English medical literature.
More research is needed to improve both diagnosis and treatment. It is important that more stories are heard to paint a more complete picture of Danon Disease.
Monday, February 28th is Rare Disease Day
Rare Disease Day is a globally-coordinated movement on rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease.
Rare Disease Day is observed every year on February 28th (or 29th in leap years)—the rarest day of the year. This day is dedicated to raising awareness and generating change for the 300 million people worldwide living with a rare disease, their families and caregivers.
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