INTERNATIONAL WAGR SYNDROME ASSOCIATION

Rating: 5 stars   12 reviews

Issues: Health

Location: PO Box 769 Hanover PA 17331 USA

Mission: The mission of the IWSA is to promote international knowledge and awareness of WAGR syndrome and its complications and treatments, to stimulate research and to reach out to those affected by WAGR syndrome in an effort to improve their lives.
2011 Top-Rated Nonprofit
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Community Reviews

Rating: 5 stars  

1 person found this review helpful

As a volunteer for this organization, I can vouch for the IWSA's determination to manage its income as carefully, thoughtfully, and transparently as possible. With an all-volunteer staff, negligible overhead, and passionate supporters, all of its resources go directly to programming.

And as a parent whose child has benefited tremendously from everything the IWSA does, I can testify to the fact that this group makes every dollar accomplish life-saving, life-changing things.

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Rating: 5 stars  

1 person found this review helpful

The IWSA was my life preserver when I was swimming in fear off what my son's future would be like. Their knowledge of this disorder was a huge help to not only my family, but our doctors too. We have met other parents who deal with what we do day to day and now they are part of our own "family". I would be lost without them!

I've personally experienced the results of this organization in...

The IWSA has helped me know what tests my son needs to help him live a full life. They have kept me informed of what medical issues to look out for so we can catch them early and improve his health. Their list-serve has been a true blessing as it has helped me connect with other families who are dealing with the same issues we are.

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

None

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

Did your volunteer experience have an effect on you? (teaching you a new skill, or introducing new friends, etc.)

Volunteering for the IWSA has given me more compassion for families dealing with medical issues.

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Rating: 5 stars  

1 person found this review helpful

I don't know what I would do without the IWSA. I have learned more about my child by talking and sharing with parents, than I could ever learn from a textbook. We would have NEVER learned about the NIH study without the support of the IWSA. This is a group that I will be forever connected to!

I've personally experienced the results of this organization in...

Better healthcare, better services at school, access to professionals, knowledge, power, and understanding

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

encourage more parents to get involved in helping the organization on a day to day basis.

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