Desiree Lyon is the Founder, Executive Director and Global Director of the American Porphyria Foundation. She serves as President of the Howewrite Publishing, Inc and holds 30 years of experience working in rare diseases.

She also worked as President of Wealdstone Corporation and Agro Finance.

As a lifelong advocate for patients, Ms. Lyon has served on the boards of the National Prostate Cancer Coalition, National Organization of Rare Disorders, Alliance of Genetic Support Groups, Council of Regional Genetics, Marshall Pann Charities for Afghanistan, M.D. Anderson Cancer Center, and the University of Texas Medical Branch.

Ms. Lyon is a graduate of Auburn University.