International Pemphigus Pemphigoid Foundation Advocacy Research Coordinator
Like others with a rare disease, Marc experienced delays in diagnosis, multiple wrong treatments, surgical procedures and difficulty finding a knowledgeable physician. Eventually, Marc lost the vision in his left eye from the disease. This inspired him to help others with the disease. He is a member of the American Academy of Dermatology Drug Transparency Task Force, sits on the Executive Board of Directors for The International Alliance for Dermatological Patient Organizations as their Treasurer, serves on the Board of Directors of Haystack Project, and is a committee advisor for Rare Disease Legislative Advocates. Marc recently joined Rare Disease International in the establishment of the WHO Collaborative Global Network for Rare Diseases Panel of Experts to ensure a lasting impact on the lives of people living with a rare disease around the globe.
No relationships to disclose