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Joan S.

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1 reviews

Review for Autoinflammatory Alliance, San Francisco, CA, USA

Rating: 5 stars  

NOMID Alliance, has been a real life saver in our family.
When our grandson presented with an assortment of serious problem from a rash on the day of his birth, to painful joints, bowel problems and many other problems, the doctors treated him symptomatically. After hours of searching for answers on line I came across the NOMID Alliance and within 24 hours of my initial contact with them many of our questions were answered. A diagnosis was made and we traveled to the NIH where treatment began with Anakinra. Within 24 hours we had a happy, pain free little boy who thrives and is a joy to his whole family. Along the way we have asked questions and recieved answers and help promptly. I cant tell you what would have been if the NOMID Alliance had not been around. So thank you so much.

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

Yes

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

I would carry on doing the sterling job that they all do.

Role:  Volunteer & I give out the pamlets and in formation at hospitals and to doctors both in Israel and South Africa and try to raise awareness of CAPS and NOMID syndromes.
 
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