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Dutch_Jo

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1 reviews

Review for Barth Syndrome Foundation Inc, Larchmont, NY, USA

Rating: 5 stars  

The Barth Syndrome Foundation and their affiliate the Barth Syndrome Trust in UK changed my life. I am a mother of a person with Barth Syndrome. The support and information we received from this organisation helped me strongly in finding my way to cope in a better way with this terrible disease.
The doctors of my son get better information about treatments that work and about those that don't work. The BSF finances very important research, that is not only important for patients with Barth Syndrome, but that can be very helpful for other rare diseases and for widelyspread diseases as Alzheimer and neutropenia after cancer treatments. I met other affected families via meetings organised by BSF and many of those families have become real life friends and are more supportive and compassionate than my own family.

If I had to make changes to this organization, I would...

give them more money to do more good work

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2014

Role:  Client Served