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helena

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INTERNATIONAL WAGR SYNDROME ASSOCIATION
June 28, 2011

This group has been a lifesaver to my daughter who has WAGR and sanity to myself and family. My daughter was 18 when we first found this group. We were given advise to check kidneys for FSGS, other health issues which were never mentioned to us by doctors. Doctors here in UK, 23 years ago could not give us much information. Since joining this group we have connected with other families going through the same hurdles as us, having the same problems as us, and behaviour issues.

The Great!

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

Medical issues, advise, a friendly warm and caring group, willing to comfort, offer a shoulder to cry on, given me strength to carry on. Made me laugh with their humour. Helped me manage my daughter's behaviour issues and medical issues. They made me feel human again, and not alone and the only person going through this.

Ways to make it better...

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

None

More feedback

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

How did you find this group?

Extremely helpful, friendly, warm and caring, professional in their advise and helpful information to give my child a longer life expectancy.

What, if any, change in your life has this group encouraged?

Lifesaving medical issues to be checked for my child by doctors. Ifeel they are my second family.

When was your last experience with this nonprofit?

2011

MY ROLE:
Client Served & contributed in translation for another family with a child with WAGR.