My Nonprofit Reviews

Life-saving organization! Our son is affected, and BSF has been there from the beginning. Disseminating information to public, healthcare professionals and always seeking out newly diagnosed families. Once you are a member odf a rare disease club, you become an expert, and best advocate for your child. BSF is there to help you do that!

BSF is truly an amazing organization. They are a lifeline to families and individuals affected by Bart Syndrome. The wealth of knowledge and information, compassion and understanding, friendship and hope, that comes from being a part of an active, professional and caring foundation is beyond words. Barth Syndrome Foundation is simply phenomenal.

Mercy Airlift has helped my family on more than one occasion. After our son was born with Barth Syndrome (a rare metabolic disease), Mercy Airlift folks were able to provide us with flights to the Barth Syndrome medical and scientific conference. This simple gift allowed us to learn more about the disease, understand treatments, gave us hope for future, and started life-long friendships with people all over the world. Barth Syndrome Foundation became our lifeline. Mercy Airlift made that possible for us!!!
Thank you so much for helping us!

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When our son was diagnosed with Barth Syndrome, we were terrified. BSF not only helped us through some of the toughest times in our lives, it also showed us hope and support beyond anything imaginable. If you are one of the few affected families around the world with this rare disease, you feel alone and misunderstood by everyone. In most cases, not even the Drs that are working on saving your child's life know anything about Barth Syndrome. The info and expert advice, coupled with medical and scientific advisory board and all the researchers working on the cure are INVALUABLE!!! You will never meet another group of people as dedicated and unwavering as BSF!

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