Saving lives through education, advances in treatment and finding a cure for Barth syndrome
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.
Our Registry and Repository
Learn why this is so vital to finding a treatment and one day, a cure for Barth syndrome.
Enrol now and make a contribution to the future of research.
"I have two sons with Barth syndrome and they have different symptoms. We decided to enrol them into the Registry so that our two pieces of this puzzle can be joined to all the other pieces. One day the puzzle will be complete and we’ll find the treatments that will translate into a better life for our boys and all their extended Barth family."