Industry leaders in rare disease Patient Advocacy today announced that they have launched Professional Patient Advocates in Life Sciences (PPALS), a nonprofit organization developed to support and advance the function of Patient Advocacy within the biotech and pharmaceutical industry. Research shows that life science companies vary greatly in how they define and utilize patient advocacy, creating an opportunity to bring more uniform and consistent professional standards for the profession.(1)
PPALS’ mission is to advance Patient Advocacy as a profession and serve as a catalyst for positive change by bringing the concerns and needs of patients and the profiles of patient advocacy organizations to industry.
“Establishing a strategic patient advocacy function can help a company gain a deeper understanding of the unmet medical needs and interests of people living with rare diseases and their families,” said John F. Crowley, Chairman and CEO of Amicus Therapeutics and member of the Global Genes Board of Directors. “We applaud PPALS for focusing on this important initiative to further develop and professionalize the advocacy function, which provides education and a channel back to life science companies so patients’ voices can be heard.”
PPALS, in collaboration with Global Genes, is working to establish a national education program for members of patient advocacy organizations. The course curriculum will include topics such as the history of patient advocacy, public policy, the role of patient advocacy in drug development, understanding reimbursement and access to medications, and much more. PPALS will utilize existing disease-specific patient advocacy organizations, national health associations and the expertise of colleagues from academia and government agencies to develop an inclusive program drawing on their areas of knowledge and experience.
“Industry is rapidly adopting the growing role of patient advocates in the drug development process, from disease education and awareness to funding research and participating in clinical trial design,” said Nicole Boice, CEO of Global Genes. “We are honored to be a part of this first-of-a-kind certification program that we hope will provide industry with a greater ability to fulfill its mission of serving patients and developing innovative treatments.”
The national certification program for Patient Advocacy will be launched in May 2016 as an in-person course of study hosted by PPALS. The PPALS inaugural meeting will be held on Sun., Sept. 27, 2015 in conjunction with the Global Genes Rare Patient Advocacy Summit at the Huntington Hyatt in Huntington Beach, CA.
About the Professional Patient Advocates in Life Sciences
Professional Patient Advocates in Life Sciences (PPALS) is a 501(c)(3) nonprofit organization committed to defining and advancing the function of Patient Advocacy within the biotech and pharmaceutical industries. PPALS was established by Jean Campbell, Jayne Gershkowitz and Barbara Wuebbels, who lead the Patient Advocacy function within their respective companies. Since its inception, PPALS has received support from Aegerion Pharmaceuticals of Cambridge, MA, Amicus Therapeutics of Cranbury, NJ, Audentes Therapeutics of San Francisco, CA, Genzyme, a Sanofi company, of Cambridge, MA, NPS Pharmaceuticals of Bedminster, NJ, and Shire plc of Lexington, MA. PPALS is designed to represent, support and encourage individuals to achieve the goal of improving the lives of their respective rare disease patient communities with the goal of advancing Patient Advocacy as a profession. For more information about PPALS, visit PPALS.org.
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