We are pleased to welcome new ePAG Marc Büdenbender to Endo-ERN and MTG1.

Marc joined the board of Let’s Cure ACC after surviving stage IV adrenocortical carcinoma, driven by a strong desire to support others coping with this very rare and life-threatening disease. Becoming a member of the ePAG within Endo-ERN allows him to take that commitment to the next level — by working collaboratively with other patient representatives and medical experts in the field of rare adrenal disorders to improve patient care across Europe, equally and consistently, from diagnosis through to long-term aftercare.

In his own words:

“While every rare disease has its own unique challenges, the rare disease community across Europe often faces similar systemic issues — such as delayed diagnosis, limited access to expertise, or fragmented care structures. Endo-ERN is an outstanding initiative that unites the voices of smaller patient communities into a stronger collective voice that can be heard by institutions and decision-makers at national and European levels.

I look forward to contributing my experience as an adrenal cancer survivor, a patient advocate, and a former communications and government affairs professional to support Endo-ERN’s mission of improving care and equity for patients with rare endocrine conditions.”