Johan de Graaf was elected to the EURORDIS Board of Directors in 2024.
Johan was diagnosed with a tumor in the hypothalamic and pituitary region, a diagnosis that changed his life and led him to patient advocacy. He has been Chair of the Dutch Pituitary Foundation since 2015, and also co-chairs the patient board of the European Society for Endocrinology. He is involved in Endo-ERN as ePAG co-chair of MTG Pituitary and is involved in the WP Research and Science.
Johan also has experience working with national HTA bodies on the reimbursement of new medicines and is a member of the EURORDIS HTA TF.
He is a national EMA expert; has been involved in Horizon scanning, Appraisal committee, and Reimbursement of medicine.
He is an alumnus of the EURORDIS Open Academy.
Email: j.degraaf@hypofyse.nl