The Foundation for Sarcoidosis Research (FSR), the leading international nonprofit organization dedicated to finding a cure for sarcoidosis and improving care for sarcoidosis patients, has announced the formation of a new patient speakers’ bureau.
This bureau consists of 14 trained sarcoidosis patient advocates who will share their personal stories to advocate for FSR and raise awareness for sarcoidosis. Members of the FSR Speakers’ Bureau underwent a full training program with Living Proof Advocacy, an organization that provides coaching, consulting services and coaching certifications, in order to utilize their skills to speak on a range of topics related to sarcoidosis.
The training program was sponsored by Mallinckrodt Pharmaceuticals.
“This is a very proficient group of patient advocates who each have their own mix of manifestations and personal stories about their sarcoidosis diagnosis,” Mary McGowan, CEO of Foundation for Sarcoidosis Research, said in a press release. “Their inspiring stories and insightful reflections add a vital voice to improving the understanding of the lives and experiences of chronically ill patients. Each of their finely crafted stories help to build understanding, awareness, and provides depth to our understanding of the challenges of triumphs of living with a complex rare disease.”
This bureau consists of 14 experienced and trained sarcoidosis patient advocates.
Topics the FSR Speakers’ Bureau will discuss with the public include the challenges of living with a rare, chronic, immunocompromising illness, COVID-19 and being immunocompromised, improving patient access to qualified care and effective treatments, and improving doctor patient communication. Members can be requested through the FSR website to share their unique stories to a variety of different stakeholders and communities, including patients, industry, donors, physicians, media, and legislative and/or policymakers.