Mark Skinner, JD was honored with one of the National Bleeding Disorder Foundation’s (NBDF) highest accolades, the Lifetime Achievement Award, at its Bleeding Disorders Conference, held in Orlando, Florida on August 13-15th, 2026.
A Lifetime of Hemophilia Advocacy and Leadership
Born with hemophilia, Skinner has been an advocate, researcher, philanthropist and leader in the bleeding disorders community for more than four decades. From the beginning, Mark’s parents encouraged him not to let his diagnosis get in the way of his dreams. Armed with degrees in public administration and business administration from Kansas State University, and a Juris Doctor from Washburn University School of Law, he began his career in public service and policymaking. He served as chief of staff to the speaker of the Kansas House of Representatives. He later joined the American Insurance Association, where he served as vice president of state programs and developed extensive expertise in health care policy, insurance regulation, and government affairs.
Leading Advocacy During the HIV and Hepatitis Crisis
During the 1980s and 1990, as the hemophilia community endured the devastating impact of HIV and hepatitis C infections through contaminated factor products, Skinner became a leading advocate on blood safety and patient policy issues. As chair of the National Bleeding Disorders Foundation’s (then the National Hemophilia Foundation) Advocacy Committee, he helped guide advocacy efforts that led to the establishment of the Ricky Ray Relief Fund Act, which provided compensation for people and families who contracted HIV through contaminated blood products.
Advancing the Mission of the National Bleeding Disorders Foundation and the Global Community
Skinner served as president of the board of directors of NBDF, where he worked to strengthen patient advocacy programs, expand access to comprehensive care, and increase funding for bleeding disorders research. He was awarded the Mary M. Gooley Humanitarian of the Year Award in 2003. Following this tenure, he took his advocacy skills to the World Federation of Hemophilia (WFH), serving as president of the global bleeding disorders organization from 2004 to 2012.
The PROBE Study and Patient-Centered Research
In 2012, he founded the Institute for Policy Advancement and launched the Patient Reported Outcomes, Burdens, and Experiences (PROBE) Study, an international effort to measure outcomes that matter most to individuals with bleeding disorders, including quality of life, treatment burden, and lived experience. The initiative involved hemophilia organizations across more than 20 countries and created validated tools for measuring patient-reported outcomes, helping strengthen the role of lived experience experts in research and healthcare decision-making. Today the PROBE Study is implemented in more than 100 countries.
A Trusted Voice in Rare Disease and Public Health Policy
In addition to his global research and leadership, Mark has also served as a trusted voice in matters of national importance in the United States, including his appointments to the U.S. Health and Human Services Advisory Committee on Blood and Tissue Safety and Availability, and board leadership roles with ICER, NORD, and PCORI, and long-standing role as a member of NBDF’s Medical and Scientific Advisory Committee (MASAC). His credibility, thoughtfulness, and consensus-building skills have made him a sought-after advisor across the rare disease and public health spectrum.
A Lasting Legacy for Future Generations
Beyond the remarkable resume lies Mark’s true legacy: a life devoted to others. Upon the passing of his mother, Mark and his family created the Susan Skinner Memorial Fund scholarship, a prestigious opportunity for women advocates to improve the care and support of women and girls with bleeding disorders.
“Mark has mentored a generation of advocates, modeled integrity in every forum, and championed the idea that people with bleeding disorders are not defined by their diagnosis, but empowered by their voice and agency,” said NBDF President and CEO Philip Gattone. “It is our honor to recognize Mark with NBDF’s Lifetime Achievement Award.”
