The Barth Syndrome Foundation was founded in 2001 as a collection of families searching for answers. Since then, our community has literally and figuratively grown up and expanded. Research has advanced exponentially. We are now one of 5% of rare diseases that have a treatment available. This changes not only where we are today and but also where we can go – it changes everything except who we are at our core.
Our Mission
To collectively and tenaciously work toward saving and improving the lives of those impacted by Barth syndrome
Our Vision
A world in which everyone impacted by Barth syndrome can thrive and live the life they choose
We'll pursue this mission by focusing on five things:
- Protecting the heart of the community
- Driving toward treatments and a cure
- Investing in research
- Advocating for the community
- Never, ever giving up
You can read more about our strategic plan here:
