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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.

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.