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West Virginia forms rare disease advisory panel

CHARLESTON — A bill creating a rare disease advisory panel was signed into law Wednesday by the governor of West Virginia.

The West Virginia Council on Rare Diseases will advise state agencies, legislators and other groups involved in the treatment of rare diseases and promote the development of and access to effective treatments.

In support of the legislation was a coalition of the American Cancer Society Cancer Action Network, the West Virginia Chapter National Hemophilia Foundation, Parkinson’s, the National Organization for Rare Diseases, West Virginia Academy of Family Physicians, Immune Deficiency Foundation, Leukemia and Lymphoma Society, Epilepsy Foundation WV, West Virginia Osteopathic Medical Association, Arachnoiditis Society for Awareness and Prevention, West Virginia State Medical Association, American Lung Association and the West Virginia Kids Cancer Crusaders.

Senate Bill 269, which created the council, was adopted by the Legislature on March 7. The council will consist of 12 members including the secretary of the Department of Health and Human Resources and 11 members appointed by the governor.

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