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 a founding member of The Neuromuscular Disorders Association of Norway (Foreningen for muskelsyke – FFM), has served as President in several periods and is at present project developer and policy advisor. 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

Interview:

1. a) Tell us a little bit about yourself

I am a retired, but still active, editor and journalist who lives in Oslo. I have three children and three grandchildren. My interest at present is promoting patient involvement in research and clinical trials,  developing a patient and health professional partnership.

1. b) What is your role in EURO-NMD

I am a member of PAB, and patient representative in Multidisciplinary Management and Care Group.

1. c) What are your expectations of the network

Share experience and develop cooperation across Europe. Develop a multidisciplinary approach to treating NMD. Facilitate improved knowledge of rare neuromuscular disorders and quicker and better diagnosis and treatment