A long-time patient advocate, Jayne joined Amicus Therapeutics in 2006, where she develops and executes global strategies that ensure people living with rare diseases and their families remain at the core of all the company’s operations. Jayne founded the company’s Patient Advisory Boards program, which helps give voice to the concerns of patients, families, and caregivers, and she leads Amicus’ Public Policy work to advocate for policies that advance access to diagnosis, drug development and treatment, to better satisfy unmet needs among those living with rare diseases. She also established Healing Beyond Disease™, an Amicus initiative of philanthropy and volunteerism to further serve the rare disease community.
After many years in corporate marketing communications and nonprofit management, Jayne began her extraordinary career in patient advocacy leading NTSAD as Executive Director from 1998-2006, where she broadened programs and services for families and was a driving force in the launch of NTSAD’s Research Initiative, creating the path for today’s advancements.
A tireless advocate and recognized expert, Jayne co-founded Professional Patient Advocates in Life Sciences (PPALS), an organization that provides authentic patient advocacy education for biotech and pharmaceutical professionals. Throughout her career, Jayne has been honored for her patient advocacy leadership efforts as the recipient of the second annual “Heart of BioNJ” Award in 2019, and a PharmaVOICE 100 honoree in 2018, for providing inspiration and innovation in the life sciences industry. She speaks frequently on patient advocacy at industry conferences and serves on several boards.
We hope you join us as we celebrate Jayne on November 9, 2023, at Imagine & Believe, held at the Royal Sonesta Boston. Mark your calendar and save the date!