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June 24, 2011

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June 24, 2011

Very helpful in connecting me with other patients and sourcing information from experts, especially when I fell pregnant. The pdf from website was invaluable in helping myself and my doctors evaluate my symptoms.

The Great!

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

Australia

Ways to make it better...

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

not really be able to think of many. I love the idea of a children's book and that idea seems to be on the cards.

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?

The person who runs it found me posting on a rare diseases forum.

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

Connecting with others that have a rare disease.

When was your last experience with this nonprofit?

2011

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