BSF is both as a family, loving, helpful and supporting, and as a huge source of information. Even if our son is affected by a rare disease, we never feel alone, and BSF give us the strenght to live with Barth Syndrome, and give us hope that the future of our kids will be brighter
Advocacy, community support, research... All arising from this incredible and incredibly committed community of patients, families, friends, clinicians, and researchers.
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Wonderful organization connecting patients, families, physicians, and researchers in a collaborative effort to improve and save patients' lives!
Barth Syndrome Foundation is one of the most educational organizations that I have ever experienced. Things that benefitted me the most are the research updates and the various accessible seminars on the website. It is a very inclusive organization as it not only united the families but also united the researchers together. It has been a very pleasant time for me to work with Barth Syndrome Foundation, and I believe that it is making an enormous difference for everyone in need.
Barth Syndrome Foundation dedicates itself to promoting Barth Syndrome and cardiolipin research. As a researcher, I always find their website to be very useful as it contains the most updated news in the current research area. It also contains seminar recordings that are publicly accessible, making it very inclusive in its accessibility. From my experience of working with the staff in the foundation, they are all very friendly and are always trying their best to help me when I was reaching out to them. Overall, it is an excellent organization that can benefit both the patients, families, and scientists.
I participate in research and patient care of patients with Barth Syndrome and would be unable to do this work without the incredible work and support of the Barth Syndrome Foundation. It is a warm and genuine community and I am grateful to collaborate with them.
The BSF is highly supportive of young investigators in the field and this has undoubtedly led to the furthering of our understanding of BTHS and therapeutic development for this rare disease. The conferences are extremely well planned and enable crucial interactions between patients, families, clinicians, and researchers. - Christina Pacak
I've been involved with the BSF since its inception, 20 years ago. I've been a researcher and still am a volunteer -- I would no longer be involved if they were not first rate: in fact, they have exceeded all expectations in such a short time. This is because of a clearly defined sense of mission of the leaders. There is a mission of achieving therapies and perhaps even a cure, done purposely and scientifically, no shortcuts, no snake oil. In addition, there have been excellent additions to BSF's offerings in the form of Family Services and support. Families with Barth syndrome children find hope and love.
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When BSF was founded in 2000, when so little was known or understood about Barth Syndrome, I never expected that it would lead to so much progress: in less than 20 years, BSF has brought together a large number of researchers that collaborate; lifespan has increased dramatically with better understanding of the disease mechanisms; BSF-funded research has led to 2 clinical trials seeking to alleviate the disease; BSF offers excellent educational materials for families; BSF offers tremendous support to affected families thru their Family Services section. The future looks very hopeful.
BSF is a wonderful supportive and knowledgeable patient organization run by excellent and enthusiastic parents and patients.
The organization have spurred scientists to dedicate their work to elucidate the nature of the disease and come with useful thoughts about potential cures.
Care in the broadest meaning of the word and science are brought together in a translational approach to improve life by means of BSF's efforts
BSF Inc. is a great non-profit organization combined with patients and their families, clinicians and scientific researchers, and volunteers, offering warm and family-like but most efficient work from beginning to nowadays.
The Barth Syndrome Foundation is a caring and committed, worldwide community that includes patients, families, scientists, physicians, and other healthcare professionals. Nothing like it that I've ever worked with.
I have worked with the Barth Syndrome Foundation for more than 15 years as a physician and a researcher. They are well organized and focused on education and advancing treatment for Barth Syndrome for families, scientists, physicians and health professionals. They have a terrific record of funding research, including clinical, basic science and translational research. They have a unique conference every 2 years that brings together families, scientists and clinicians. The foundation continues to grow and is a model foundation for rare disease advocacy.
Barth Syndrome Foundation's commitment to advance an awareness and science behind this enigmatic killer makes BSF truly the Best nonprofit organization.
I became involved with the Barth Syndrome Foundation when I attended their first meeting in 2000. What a long way they have come in just 12 years! They provide substantial support for research aimed at understanding the condition, they provide amazing support to the affected and their families, they host biennial Family and Scientific conferences, there is a web site full of information, a listserv for families and another one for doctors and scientists, there are volunteer experts that can be consulted, families can exchange experiences and advice regarding this variable disease -- and there is the welcoming warmth, the belonging to a superfamily, the link across oceans and continents. In short, BSF is wonderful!