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Newly Diagnosed

If you are a newly diagnosed family, you are no longer alone in coping with Barth syndrome (BTHS).

We started working together and established the Foundation because knowledge of this complex disorder was very limited. There was nowhere to turn to for help and support. We have changed this.

We hope that by visiting our site, we will provide you with the information you require, and that you also take away a belief in yourself, that you can make a difference. Barth syndrome can affect the highest and humblest, richest and poorest alike. The same is true of dedication, compassion and kindness. For more information about the services we provide, please visit the following webpages. 

Learn about Barth syndrome

Knowledge is power when it comes to dealing with Barth syndrome. These pages contain the basic information you need to know about the disease.

Participate in the Barth Syndrome Registry & Repository

The purpose of the Barth Syndrome Registry and Repository (BRR) is to amass information and biological specimens from individuals with Barth syndrome (BTHS) into a single database which will be utilized by researchers to better understand Barth syndrome. Through our families' contribution to the BRR, knowledge is gained, research is facilitated, and differences are being made. 

Get Connected with the Barth Syndrome Foundation

Contact the Foundation to receive the latest information about new treatments and clinical trials, opportunities to participate in research and events, and updates about our progress in advancing the search for a cure.

Get support

We offer many types of support including: family programs, educational seminars, and connections with others living with Barth syndrome. Please see Connect With Community for more information.

Please contact us if you experience any difficulties finding the information you require.

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