You are no longer alone in coping with Barth syndrome (BTHS). BSF Family Services provides a caring community that will offer each Barth Family information, guidance and emotional support. We are dedicated to education, advancing treatments, and finding a cure for Barth syndrome. We are here to help, and you can contact us at any time. We know from our own experience what a difference this can make to each affected family. Our desire is that you will realize the impact BSF can have in your family.
We are not only active volunteers and believers in the programs of this organization; we are families of someone affected by Barth syndrome. BSF is much more than a website, we are a community of parents, grandparents, wives, sons, daughters, affected individuals (boys and men), and extended families. So our experiences will be very similar to yours.
When you contact us, we will put you in touch with someone from our team who understands what you are going through. With your permission, this person will keep in regular contact with you, either by phone or email. Your BSF Family Services volunteer will introduce you to the many different ways we can help, to the information that is available, to any special events being organized for families and to the larger BSF 'family'. For more information please see:
Meet Our Community
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.
The BRR empowers every person who has BTHS and family members around the world to make a difference in the fight to conquer BTHS. By participating in the BRR and completing your profile survey about your own unique experience with BTHS, you are contributing to a global database about the accessibility of diagnosis, care and treatments, and disease severity of BTHS. The BRR is a centralized resource that is vital to helping researchers learn more about BTHS, accelerating the development of new research and treatments, identifying issues that need research, and improving the care of all those with BTHS.
International Scientific, Medical & Family Conference
The Barth Syndrome Foundation's International Scientific, Medical & Family Conference, held every two years, is really two simultaneous meetings. One meeting brings together doctors and scientists involved in the many aspects of the disorder to discuss the latest underlying scientific developments and clinical insights; it is a unique experience that encourages collaboration and accelerates advances in understanding and treatment. The other is a family meeting in which the latest information is discussed with families. Free consultation sessions are also held enabling families to meet with medical experts from around the world. In addition, opportunities to participate in research studies and provide important clinical data and biological samples to the Barth Syndrome Registry and Repository are offered to Barth syndrome individuals.
We have several private Facebook groups where members of our community can connect, including groups for families who don't speak English. Contact us to learn more about our Facebook Groups and other opportunities to become a part of our Barth syndrome community.
Please join us and become a partner with our many volunteers from around the world who are making a difference in the lives of those affected by Barth syndrome. Together we are working towards our vision where a diagnosis means a future filled with hope and quality care. Together we are working to save lives. We all look forward to the day our vision becomes a reality when "Barth syndrome no longer causes suffering or loss of life."
Please contact us by email or by telephone at 855-662-2784 (855-NO-BARTH) or 914-303-6323 for more information on how to join our organization. We look forward to hearing from you!