Ms. Buckley has been a Patient/Health Advocate for three decades while living with the chronic pain condition Ehlers-Danlos Syndrome. She currently serves on the board of PainCommunity.org and volunteers in many roles for The Ehlers-Danlos Society (Ehlers-Danlos.com). Additionally, she is a member of the PCORI Editorial Review Board and serves as a member of the Stakeholder Advisory ono a large PCORI funded project researching pain management. She has served on the boards of Ehlers-Danlos National Foundation, American Pain Foundation, Academy of Integrative Pain Management. Other volunteer experience has been with Northern California Pain Care Initiative, National Fibromyalgia Association, American Cancer Society, Special Olympics, Rare Disease Legislative Advocacy (RDLA) and NORD. With an undergraduate degree in Social Work and an MBA in accounting she has worked in banking and business management. In 2019 she became a Board Certified Patient Advocate. She remains active in legislative and regulatory advocacy efforts and has experience testifying at local, state and federal policy hearings. She has spoken at conferences and in the media, written articles and coached hundreds of people to self-advocate for better care.
Advocacy advisor & patient representative