Coriell Board of Trustees
Jayne is one of the founding leaders of rare disease company Amicus Therapeutics. Over almost 20 years, she developed an industry-leading Patient Advocacy function, and served as Chief Patient Advocate from 2016 to 2025, until becoming Emerita. (Amicus was acquired by BioMarin Pharmaceuticals just months after her retirement earlier this year.) The global strategies she conceived and implemented cross functionally ensure that the needs of people living with rare diseases and their families are integrated to all company operations and keep extraordinary patient dedication as the bedrock of Amicus.
In 2007, Jayne founded the company’s Patient Advisory Boards program, an industry first, through which patients, families and caregivers openly share their input and concerns for every Amicus asset. She instituted Amicus’ Public Policy activities to advocate for policies that advance innovation and expand access to satisfy unmet needs of those living with rare diseases; and guided advocacy-based evidence generation resulting in multiple publications co-authored with patient community thought leaders and medical key opinion leaders. She established Healing Beyond Disease™, an Amicus philanthropic and volunteer initiative to further serve the rare disease community in meaningful ways. She was in the C-suite for more than 10 years, reporting directly to the CEO.
Jayne is widely recognized as a trailblazer in Patient Advocacy. She is a 2026 See the Light Awardee from the Mathew Forbes Romer Foundation; the 2025 recipient of BioNJ’s Sol J. Barer Award for Vision, Innovation and Leadership; the 2023 Imagine & Believe honoree of National Tay-Sachs & Allied Diseases Association. In 2019, she received the second annual “Heart of BioNJ” Award in honor of her selflessness and dedication to patients in the rare disease community. She is a 2018 PharmaVOICE 100 honoree, recognized for providing inspiration and innovation in the life sciences industry. She often speaks about the strategic function of Patient Advocacy at industry conferences and how it is the essence of authentic, enterprise-wide patient-focused drug development. She is co-author on many publications and is co-holder of three patents for unique small molecule medication packaging developed in partnership with patient community representatives.
Upon her retirement from Amicus, she completed her second term as treasurer of the Board of Trustees of BioNJ as well as her long-standing positions as a member of the Board of Trustees of BioNJ and the Board of Trustees of the Healthcare Institute of New Jersey. (HINJ). Jayne is the co-founder and vice chair of the board of Professional Patient Advocates in Life Sciences (PPALS), a non-profit educational organization committed to supporting the function of Patient Advocacy within the biotech and pharmaceutical industries. Jayne was the executive director of National Tay-Sachs & Allied Diseases Association (NTSAD) from 1998 to 2006, then served on its board for many years. She also was a board member and vice chair of the National Organization for Rare Disorders (NORD). Her earlier career includes leadership roles in corporate communications, marketing and public relations, and development in both for-profit and non-profit sectors.
A native of Medford, Massachusetts, Jayne graduated from Syracuse University with a dual degree in Newspaper Journalism and English Literature and studied marketing management at Radcliffe College. She and her husband, Bruce, reside in Lambertville, NJ; they have two adult children and two granddogs.
