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Enhancing the lives and outcomes
of Canadian individuals and families
affected by Barth syndrome."


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International Scientific, Medical & Family Conference

The Barth Syndrome Foundation's (BSF) biennial conferences bring affected families, research scientists, and clinicians together in one place at one time for a dual track meeting.  

Doctors who might care for a single patient will have the opportunity to see well over 50 individuals with Barth syndrome at once; thereby, gaining a greater understanding of the breadth of the disorder. Additionally, they will be able to compare notes with other physicians and also hear from scientific experts about the latest discoveries and upcoming potential treatment options.

Scientists will hear presentations on colleagues' recent work as well as learn from and have a chance to collaborate with experts in other fields. Furthermore, they will gain insight into the clinical aspects of the disorder and witness the medical ramifications of what they discover in the laboratory. 

Families and individuals with Barth syndrome have a unique opportunity to be seen by the world's greatest experts in Barth syndrome, contributing directly to the search for a cure by providing their information, their health history, and even their own tissue in addition to learning from experts and from each other so that they can better advocate for themselves or their child(ren).

2021 Conference Update from BSF Jan 5, 2021:

As you know, the International Scientific, Medical, and Family Conference is a lifeline for our global community, bringing together families and experts from all corners of the world for a week of unity, solidarity, and sharing.

Also as you know, COVID-19 required us to host a virtual scientific symposium in July. Now, after careful consideration and based on input from experts as well as input from our community, we have had to make the very difficult decision to convert the July 2021 Conference into a virtual event as well.

Like many of you, we remain concerned that travel poses too great of a risk for our immune-compromised population, and almost all of our international families have indicated that they will not be able to travel.

Beyond the significant health concerns, we also recognize that many are financially struggling given the challenges of this past year. Rather than let another year go by, we are excited to announce that BSF will host a virtual event designed to include as many people as possible from around the world to join in our mission. Stay tuned for more details! Let us continue to "stay positive but test negative!" 

Please check the BSF conference page regularly for more details.


If you would like to take a look at previous conference brochures, click here

Click here to view the Scientific & Medical Presentations, Family Sessions, Poster Corner, and Grand Rounds from previous conferences as well as other Educational videos and Meet Our Community (People We Serve and Clinicians and Scientists).

Click here to view Webinar and Roundtable Recordings. 


Privacy and Disclaimer

Barth Syndrome Foundation of Canada does not endorse any drugs, tests, or treatments that we may report.

This website is for informational purposes, always check with your physician before adopting any medical treatment.

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