Jayne is a long-time patient advocacy professional with expertise on issues affecting individuals and families with rare diseases and the partnership between the patient community and industry in orphan drug development.
She joined Amicus in 2006, with increasing operational and leadership responsibilities for the company’s highly regarded Global Patient Advocacy function, which has been at the heart of Amicus since its earliest days as an R&D organization. As Chief Patient Advocate, Jayne is responsible for developing and executing the strategies that ensure patients remain at the core of all company operations, while also overseeing the global relationship management strategy and execution with patient organizations and individual key opinion leaders. Founder of the company’s Patient Advisory Boards program, she guides Amicus’ patient-focus and gives voice to the concerns of patients, families and caregivers regarding disease management, unmet medical need, communicating clinical trial results and access that help shape the company’s cross-functional efforts. Through Public Policy activities, she helps direct Amicus’ efforts as an agent for safe, expedited change of public policies to satisfy unmet need among those living with rare diseases. The company’s Grants & Charitable Contributions Program is also under her purview.
Jayne often addresses biopharma industry conferences about Patient Advocacy and patient-focused drug development. She serves on industry and association boards and committees, including: chair of BioNJ’s Patient Advocacy Committee; member of the Steering Committee of the Healthcare Institute of NJ (HINJ); a director of National Tay-Sachs & Allied Diseases Association; and co-founder and board member of the recently established Professional Patient Advocates in Life Sciences (PPALS), a nonprofit organization to advance Patient Advocacy as a profession through educational curricula, networking and a certification program. Jayne also is part of the Corporate Alliance of Global Genes and is a former vice-chair of the Board of Directors of the National Organization for Rare Disorders (NORD).
A native of Medford, Massachusetts, Jayne is a graduate of Syracuse University with a dual degree in Public Communications and English Literature and studied marketing management at Radcliffe College. She and her husband, Bruce, reside in Hightstown, NJ; they have two grown children.