The goal of our family program is to improve the quality of life for people and families affected by Barth syndrome. We provide a diverse and supportive community that brings families together, both within Canada and with families and resources around the world. The program includes information and resources as well as advocacy assistance.
If you or someone you know is newly diagnosed with Barth syndrome (BTHS), you are no longer alone. This Foundation was established, because there was limited knowledge about this very complex disorder. For years, families and individuals affected by Barth syndrome had nowhere to turn to for help and support. We have changed this.
We are not only active volunteers of this organization, we are families of someone affected by BTHS, and our experiences will be similar to yours.
We also respond to inquiries from professionals, organizations and students regarding Barth syndrome or the Barth Syndrome Foundation of Canada.
- Please check out our resources page for detailed information on the many aspects of living with Barth syndrome.
- For an Overview of Barth Syndrome, please check here and for more information about the Barth Syndrome Foundation of Canada, please check here.
- The BSF’s International Barth Syndrome Scientific, Medical & Family Conference held every two years is one of the best places for families to connect with other families and individuals with Barth syndrome, as well as to consult with the true experts on Barth syndrome. BSFCa, sponsors aspects of both the scientific and family portion of the conference, and many of our executive are active volunteers at this event.
Please contact us for more information either via our contact form, or by calling 905-873-2391.