Our Mission
Today, Barth syndrome is a rarely understood, frequently fatal, genetic disorder primarily affecting males. The Barth Syndrome Foundation is an engaged, global community whose mission is...
"Saving lives through education, advances in treatment, and finding a cure for Barth syndrome.”
Our Vision
A world in which Barth syndrome will no longer cause suffering or loss of life.
Our Goals
- To insure that everyone with Barth syndrome is quickly and accurately diagnosed.
- To insure that all diagnosed families actively participate in the Barth Syndrome Medical Database and BioBank.
- To encourage, guide, and fund additional research to improve understanding, diagnosis, and treatment, and ultimately to develop a cure for Barth syndrome.
- To communicate information about effective treatments of Barth syndrome to all attending physicians.
- To grow and strengthen our caring and informed community of Barth families actively involved in supporting each other and our organization.
- To build the expanding base of committed contributors who will provide the funds we need to achieve our vision.
- To inspire, support, and be good stewards of the time and talents of the growing number of volunteers and staff dedicated to our vision.
Our Values
- We will insure that BSF means: Credibility, Integrity, Professionalism, and Compassion.
- We will be respectful of the time and talents we are offered and good stewards of the resources we are given.
- We value collaboration and constantly seek to improve by listening to and learning from others.
- When representing BSF we place the interests of all those affected by Barth syndrome above the interest of any individual.
- We will never ever give up!
Photo courtesy of Amanda Clark ~ 2008