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Madeleine24

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3 reviews

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

Rating: 5 stars  

BSF has been part of our life since our grand-son was diagnosed about nine years ago and today we can't imagine how we and Jules' parents would have coped with the syndrome without the support of that wonderful foundation. This is the right place to get information, help, advice.....It also enables its members to share their experiences via the Listserv and this is extremely valuable when, as it is often the case with rare diseases, you don't manage to get answers to your questions anywhere. It is comforting to know that thanks to BSF and it's great team research is progressing, members can meet at their Conference, new cases are diagnosed thanks to their awareness campaigns... We are very grateful to everybody who makes all this possible every day.

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Role:  Client Served
 

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

Rating: 5 stars  

BSF, an amazing organization: its excellent website and newsletter give us information about the medical and daily aspects of the disease and also about the progress of the research financed by the Foundation. Bringing people together via the Listserv or the conferences and allowing them to share their experiences and to get help and advice is also quite appreciated. Our Thanks to the dedicated team that makes BSF so invaluable for all affected individuals and their families.

Role:  Client Served
 

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

Rating: 5 stars  

BSF has made such a huge difference in our life when our grand-son was diagnosed with Barth Syndrome when he was 3 months old. We were overwhelmed with questions nobody could answer and we found in BSF a wonderful community of parents and experts offering knowledge, advice and support. The Internet Site is a remarkable source of information for many aspects of the disease and for every day life issues, the Listserv also provides quick and useful information through shared experiences. BSF is an excellent foundation which gives hope for a better future for the children and adults affected.

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

it is perfect

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?

2013

Role:  Client Served