Barth Syndrome Foundation

The Barth Syndrome Foundation, located in Larchmont, NY, is a non-profit organization dedicated to supporting individuals and families affected by Barth Syndrome, a rare genetic disorder. They provide resources, research funding, and advocacy to improve the lives of those living with the condition.

The foundation offers a range of programs and initiatives, including research grants, virtual symposiums, and a registry and repository for patient samples. They also provide educational resources for families and educators, as well as support for newly diagnosed individuals. Through their efforts, the Barth Syndrome Foundation aims to raise awareness, advance scientific understanding, and enhance the quality of life for those affected by this rare disorder.

Generated from the website