Science &
Medical Issues
The Barth Syndrome Foundation of Canada (BSFCa) is an affiliate of the Barth Syndrome Foundation, Inc. (BSF). We are a source of support for research into the fundamental understanding of Barth syndrome (BTHS), diagnosis and treatments.
For researchers and scientists carrying out research BSF has available:
- “Seed” funding to investigators for testing initial hypotheses and collecting preliminary data leading to successful long-term funding by the National Institutes of Health and other major granting institutions. Proposals are carefully scrutinized before awards are made. Since 2007, BSFCa has contributed to research grant funding.
- An international conference, held every two years, which brings together leading scientists and researchers from across the world. The conference has a series of events including meetings, lectures and forums devoted to the exchange of the latest findings relating to basic research.
- The largest active registry of individuals with BTHS. The registry is regularly updated and contains a wealth of information relating to medical histories and physiological data.
- Access to BSF’s international Scientific & Medical Advisory Board (SMAB), which comprises world renown clinicians and scientists who are leading experts in Barth syndrome. The SMAB is an integral part of the organization. This group forms the review panel for research grants and provides scientific and medical advice and guidance to BSF’s Board of Directors.
- Access to the world’s largest reference source on published literature on BTHS, which includes an up-to-date bibliography of articles relevant to Barth syndrome.
- Access to the private “Docs Listserv”- an ongoing forum where members of our international Scientific and Medical Advisory Board, clinicians and researchers collaborate, ask questions and exchange the latest information. Please contact BSF for more information on how to join our ListServ.
- Human Tafazzin Gene Mutation & Variation Database
- Scientific & Medical Presentations
- Conference and Virtual Symposium Recordings including Webinars
- Animal and Cellular Models of Barth Syndrome
- Cell Lines & Biological Samples
For further information, please contact Melissa Huang, PhD, Clinical Research Coordinator Barth Syndrome Foundation, Inc. melissa.huang@barthsyndrome.org