Resources for Families
Resources for Parents, Guardians and Families:
By working together with our parent Foundation in the US, and other Barth syndrome affiliates around the world, we are able to provide information that we hope will make a difference for families and affected individuals when dealing with the complex issues that is Barth syndrome.
Videos
This link to BSF provides you with a series of videos to introduce you to some people who have gone through the challenges of living with Barth syndrome whether as a parent, grandparent, or carrier. More videos related to Barth syndrome can be viewed here.
Get Connected
We have several options with which families can interact with each other. BSF maintains several private Facebook groups where members of our community can connect, including groups for families who do not speak English. For those not on Facebook, BSF uses additional platforms to give everyone the chance to meet and to find help and understanding. Please contact BSF for more information on how to join our private virtual communities.
General documents (many courtesy of BSF):
The following documents are for information purposes only, and are not intended to serve as medical advice. They are not a substitute for professional care.
also, a Video–Educational Issues for a Child with Barth syndrome
More specific documents concerning aspects of Barth syndrome
(most courtesy of BSF):
Please remember that these sheets are designed for educational purposes only, and do not replace medical advice from a healthcare professional.
Thanks to gracious volunteers, we are able to provide several of the information sheets in Spanish