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nemsn

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1 reviews

Review for The National Organization For Rare Disorders, Danbury, CT, USA

Rating: 5 stars   Featured Review

NORD has been very encouraging to the patient support group which I run, for my own rare disease, Eosinophilia Myalgia Syndrome. NORD has treated our tiny organization with great respect and has been helpful in getting the word out to new patients. NORD provides real information on its website about Eosinophilia Myalgia Syndrome, which is in contrast to the vast amount of misinformation on other websites. We are a small group, we are very sick people. Our disease is not understood by the medical community so we get very little medical help and are in pretty much constant physical pain. At present we are blessed with new research, after many years of nothing. NORD has been holding our hand through it all. At the moment we are hopeful. We are thankful to NORD. www.nemsn.org

Role:  Board Member