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Building an Internal Patient Advocacy and HR Relationship Series

Part 1: Journey to Patient Advocacy

This webinar series offers a unique vehicle to explore subjects that will allow participants to better navigate this oftentimes elusive and ever-changing professional space. Join us to learn how several of our colleagues traversed the pathway to join the patient advocacy function within a biotech/pharma. While individuals who work within the patient advocacy function often come with a wide range of experience and expertise, making this a very unique role within a company, it can be challenging to obtain that first advocacy position.

Moderated by Jamie Ring, founder, Jamie Ring Advocacy Consulting, LLC, in the first session of a two-part series, Dan Leonard, Senior Director, Global Patient Advocacy, uniQure; Fatima Scipione, Head of Oncology, Patient Advocacy, Takeda Oncology; and Amy Fisher, Patient Advocacy, Spark Therapeutics will share their experiences. They will specifically focus on their pursuit of an advocacy role and how they leveraged their unique skill sets and highlighted their diverse backgrounds as a means of demonstrating how they were positioned to contribute to an advocacy role.

Jamie Ring

Jamie Ring

Founder of Jamie Ring Advocacy Consulting

Jamie Ring is the founder of Jamie Ring Advocacy Consulting, an independent advocacy consulting firm. She most recently served as the Head of Patient Advocacy at Spark Therapeutics, a leader in the field of gene therapy. In her role, Jamie was responsible for patient advocacy activities related to Spark’s disease areas of interest, particularly the Inherited Retinal Disease space where she supported the company’s development of the first FDA approved gene therapy for a genetic disease, Luxturna. Prior to joining Spark, Jamie spent 10 years at Genzyme, a Sanofi company where she most recently had served as the Vice President of Patient Advocacy and Humanitarian Programs – Rare Diseases. In that role, Jamie provided strategic oversight of all advocacy programming and managed external partnerships related to Genzyme’s global humanitarian programs which provide free therapy to hundreds of patients around the globe. Prior to Genzyme, Jamie worked at Biogen supporting patient programs for both the Multiple Sclerosis and Non-Hodgkin’s Lymphoma disease communities. Additionally, Jamie worked at the ALS Therapy Development Institute as the Associate Director of Programs, responsible for ALS disease awareness initiatives and fundraising campaigns. In 2013, Jamie was voted by PharmaVoice magazine as one of the 100 most inspiring leaders in the pharmaceutical industry.

Jamie holds a B.A. in Sociology from Union College, Schenectady, NY and a M.P.H. in Social & Behavioral Sciences from Boston University. Jamie serves on the Board of Advisors for the National Tay Sachs and Allied Diseases Association and is on the advisory board for the BU School of Public Health Pharmaceutical Certificate Program.

Dan Leonard

Daniel Leonard

Senior Director of Global Patient Advocacy at uniQure

Daniel Leonard is the Senior Director of Global Patient Advocacy at uniQure, a pioneering biotechnology company developing gene therapies for rare diseases. In this role he works primarily with hemophilia and Huntington’s disease organizations in the US and abroad. He serves as an ambassador to the patient community and as an internal advocate for patients’ interests.

Dan has spent over 20 years working in the biotech industry. Prior to joining uniQure, he spent 16 years at Genzyme, a company known as a leader in patient centricity. He is now a frequent speaker at conferences on the topic of patient advocacy with a focus on the gene therapy space.

Fatima Scipione

Fatima Scipione

Head of Oncology, Patient Advocacy and Takeda Oncology

Amy Fisher

Amy Fisher

MS. CGC, Head, Patient Advocacy, Spark Therapeutics

Amy Fisher, Head of Patient Advocacy at Spark Therapeutics, is responsible for building and sustaining relationships with patient advocacy organizations and leading a team committed to differentiated community engagement and empowerment through gene therapy research education. Amy brings over two decades’ experience in rare diseases to her current role, from clinical care in academic medicine, to medical affairs and patient advocacy roles in industry. She is passionate about ensuring the patient perspective and experience is valued throughout the drug development lifecycle. Amy earned a B.S. in Biology (Genetics and Developmental Biology, honors in Biochemistry and Molecular Biology) from Penn State University, and an M.S. in Human Genetics (Genetic Counseling) from the University of Michigan. She is a board-certified genetic counselor by the American Board of Genetic Counseling.

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