News & Events

Virtual 5K Run 2022

Our virtual 5K event can be run or walked from any location you choose at any time you choose during the month of May. There is no official start time, nor do you have to drive to a specific location. You do not need to deal with traffic, parking or poor weather. Whenever your schedule permits it, put on your walking shoes

March 2nd, 2022|

Webinar: The Guide to Patient Involvement in Rare Disease Therapy Development

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

January 20th, 2022|

2022 Request for Research Proposals

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

November 22nd, 2021|

Barth Syndrome Newsletter – November 2021

November 1, 2021 As 2021 quickly comes to an end, I am ready to see if 2022 will bring us some relief from this global pandemic. Living with someone affected with Barth syndrome, who can be immune compromised at times, has definitely put me on high alert for almost two years. Although we have not been able to get together in person, our

November 19th, 2021|

Launch of the Swag Store

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

July 6th, 2021|
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