Registry and Repository

We need your help to better understand Barth syndrome.  If you or your child has been diagnosed with Barth syndrome please join our global database and speed up the development of new research and treatments and improve the care of all those with Barth syndrome. Join here at www.barthsyndromeregistry.org.

Once you enter your data, you can view how your answers compare to others. For example, you can quickly see what medications and therapies other patients are using. You can get information about new research and participate in studies and clinical trials.