Jean-Philippe PLANÇON

Jean-Philippe Plançon has been actively engaged in patient representation and advocacy for many years. Living with a rare disease for more than 25 years, he has developed multidisciplinary expertise spanning public health, nursing, rare diseases, therapeutic patient education, medical journalism, public affairs, and patient advocacy. His expertise is further strengthened by executive training in strategy at HEC Paris. Through his work, he is committed to strengthening the role of patients in decision-making processes and contributing to the development of health policies at both national and European levels.



In 2006, he founded the French Association against Peripheral Neuropathies (AFNP), which supports and represents people living with rare neuromuscular and neuroimmunological disorders. He is also the co-founder and President of the European Patient Organization for Dysimmune and Inflammatory Neuropathies (EPODIN), which brings together patient organizations from around ten European countries. In this capacity, he actively promotes European collaboration among patients, patient organizations, and medical experts, particularly within the European Reference Network for Neuromuscular Diseases (EURO-NMD).



Former President of the French Rare Diseases Alliance (Alliance Maladies Rares), an umbrella organization representing more than 240 patient associations across France, he currently serves as National Advisor to the Alliance. He has also served on several expert committees of the French National Agency for the Safety of Medicines and Health Products (ANSM), including those focusing on immunoglobulins, labile blood products, and health product information.



Since 2021, Jean-Philippe Plançon has served as Vice-Chair of the Board of Directors of the French National Agency for the Safety of Medicines and Health Products (ANSM), where he represents patients and users of the French healthcare system. In this role, he contributes to the Agency's strategic governance and to the integration of the patient perspective into regulatory decision-making on the safety of medicines and health products.