Organizer Profile
Barth Syndrome Foundation (BSF)

Barth Syndrome Foundation (BSF)

Larchmont, New York, United States of America

Mission
Saving lives through education, advances in treatment, and finding a cure for Barth syndrome.

Vision
A world in which Barth syndrome no longer causes suffering or loss of life.

Goals
• To ensure that everyone with Barth syndrome is quickly and accurately diagnosed.
• To ensure that all diagnosed families actively participate in the Barth Syndrome Registry and Repository.
• 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.

Values
• We will ensure 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!
CONFERENCES AND COURSES