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Pulmonary Hypertension Association
March 19, 2013

In July 2011 I was diagnosed with Pulmonary Arteral Hypertension. PHA was a god send to me. Gave very helpful infomation and encoraged me when I was scared. Belong to support group also give me the opportunity to meet other patients first hand. Every othe year there is a international conferance. They provide scholorships to a many patients as they can. I was very glad I was chosen to get one. It was one of the best experiences in my life and helped understand Pulmonary Hypertension. I was inspired to give back so I am co leader to my local support group. Another thing that is wonderful is that medical research is going on. Thanks PHA for al you do.

More feedback

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

MY ROLE:
Volunteer

FIBROMUSCULAR DYSPLASIA SOCIETY OF AMERICA INC
March 19, 2013

I was diagnsed with FMD in my renal arteries in 2004. I soon found FMDSA on the internet and were very helpful in giving me information. A few years back I started to have some concerns dealing with the ethics of how money was being handled. They would state that all money donated went towards research. That was not the truth very little goes towards research. Another area of concern was that they changed how members of the broad were selected went from members voting to being appointed. In this I have concerns that there is no oversight and that the the person doing the appointing controls the broad members. The patrient registry is great however only a few centers are allwed to be a part thus limiting the number of patients. In order to get more accurate information more patients need to be involved. Foranother rare disease I have 50 centers and over 3,000 patients are involved. The one FMDSA does only has 12 centers and around 600 patients involved. The information that they do get from the small regisrty is very slow in being released to patients unless the patient is able to attend the conferance. Which for some members they are not able to attend.

More feedback

Will you volunteer or donate to this organization?

No

How much of an impact do you think this organization has?

A little

When was your last experience with this nonprofit?

2013

MY ROLE:
General Member of the Public