Patricia Melsom

Patricia was diagnosed with Central Core Myopathy shortly after the birth of her daughter, who also has the same disorder. Patricia also has a son and a grandchild with Central Core Myopathy. She is at present president, chairperson of the board and founding member of The Neuromuscular Disorders Association of Norway (Foreningen for muskelsyke – FFM). She is in addition a member of the reference group of The National Advisory Unit on Rare Disorders (Nasjonal kompetansetjeneste for sjeldne diagnoser -NKSD) and member of the national ethics committee for clinical trials for medicines and medical equipment (Komiteen for klinisk utprøving av legemidler og medisinsk utstyr REK KULMU A). Patricia is a retired journalist and editor specialising in medical science, health policy and ethics.

Contact me at pab@ern-euro-nmd.eu