Patient Advisory Council

Marc Yale was diagnosed in 2007 with Cicatricial Pemphigoid, a rare autoimmune blistering skin disease. Like others with a rare disease, he experienced delays in diagnosis 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. In 2008, he joined the International Pemphigus and Pemphigoid Foundation (IPPF) as a Peer Health Coach. He worked with people to improve their quality of life and encouraged them to become self-advocates. In 2009, he helped develop the Pemphigus and Pemphigoid Comprehensive Disease Profile giving experts insight into the patient perspective. In 2016, Marc became the Executive Director of the IPPF until .2020 after he experienced a disease relapse. He moved into the role of Advocacy & Research Coordinator for the IPPF so that he could focus on research and advocacy for all of those affected by pemphigus and pemphigoid and now serves as the IPPF Research & Policy Advisor. He has served as a member of the American Academy of Dermatology Drug Transparency Task Force, committee advisor for Rare Disease Legislative Advocates, and as a panel expert for Rare Disease International’s World Health Organization (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. In 2022, Marc helped establish the World Skin Health Coalition, A multi-stakeholder group of like-minded organizations focused on putting medical dermatology on the global health agenda. He currently sits on the Executive Board of Directors for The International Alliance for Dermatological Patient Organizations (GlobalSkin) as their President, on the Rare Disease Advisory Council of the Patient Centered Outcomes Research Institute (PCORI) and is a member of the Rare Project Advisory Board of the Center for Innovation and Value Research. Marc is a patient expert and Fellow of the European Patients Academy on Therapeutic Innovation (EUPATI). He resides in Ventura, California with his wife, Beth of 35 years.