News & Events

JANUARY 19, 2022 On January 27th, the EveryLife Foundation for Rare Diseases, in partnership with Biotechnology Innovation Organization (BIO), National Health Council, and the Pharmaceutical Research and Manufacturers of America (PhRMA), will introduce a transformational resource, the “Guide to Patient Involvement in Rare Disease Therapy Development.” Join us for this special webinar to learn more about this new resource and how it can further

AUGUST 20, 2021 Since 2002, the Barth Syndrome Foundation, Inc. and its affiliates have been awarding research grants. The Barth Syndrome Foundation of Canada have participated in their Research Grant program since 2006, and have contributed towards 16 individual grants for a total of over $380,000 US (see below for details). Together with BSF and the other affiliates (UK, France and Italy), 115 research

JULY 6, 2021 Design X Promotions has helped us create a special Barth store which gives us the chance to wear and show our logo with pride and will return a portion of all sales as a donation to the Foundation, which will help us to continue in our work to enhance the lives and outcomes of Canadian individuals and families affected by

Over $9000 raised!!! Thank you to everyone who joined us to make this years 5K event such a success. Despite being spread around the world, our Barth community can feel the love. Your support gives us HOPE for a better future for those affected by this devastating disease. JUNE 15, 2021 Our virtual 5K event can be run or walked

May 13, 2021 Along with the Barth Syndrome Foundation and its international affiliates, we are happy to announce this year's research grant recipients. Jason Moffat, PhD Professor, University of Toronto, Toronto, ON, Canada Surveying TAZ genetic interactions and mutational landscape in human cells This research is currently on-going. *Funding for this award was provided by Barth Syndrome UK, and Barth Syndrome Foundation of