Patient Advisory Council

Junaid is the Chief Medical Scientist at Microsoft Research and a practicing physician in the UK’s National Health Service. Junaid has worked across primary care, secondary care, and public health settings in addition to acting as a payer, and policymaker within the UK, where he specialized in informatics, digital transformation, and leadership. He has consulted for health care systems across the US, Europe, Australia, the Middle East, Singapore, and Europe. Academically, he is a Clinical Associate Professor at UCL (University College London), and Visiting Scientist at the Harvard School of Public Health.

Kevin Loth is the Founder of WDLBio Ltd. Previously, Kevin spent 13 years at Celgene, as VP Corporate Affairs, with responsibility for government relations, patient advocacy and communications. With a commitment to patients, Kevin was the Vice-Chair of the EBE-EuropaBio Taskforce on Rare Diseases, an industry representative on the EU Committee of Experts on Rare Diseases and Chair of the IFPMA Working Group on Rare Diseases. Kevin spent 7 years at Novartis; 3 years as Head of UK Government Relations and 4 years in Brussels as Director of European Government Affairs. Kevin, a former Public Health Epidemiologist in the UK NHS, has a PhD in Environmental Epidemiology from Imperial College, London and an MBA from Manchester Business School.

Nicola Bedlington is EPF’s Secretary General since September 2014 and was previously the Executive Director since the setting up of the EPF Secretariat in June 2006. She worked as an external expert for the European Commission on disability policy and NGO cooperation and was the first Director of the European Disability Forum during the 90s. More recently she led the ENSI Secretariat, an OECD initiated international governmental network on education and sustainable development. She has a BA (Honours) Degree Management Studies and French from the Metropolitan University Leeds (United Kingdom).

Professor Daiming Fan is the current President of the Chinese Anti-Cancer Association, President of Asian Pacific Association of Gastroenterology, Council Member of the World Gastroenterology Organization, and member of the Board of Directors of the Union for International Cancer Control. He has a long-standing interest in both clinical and basic research of digestive diseases and has been committed to the theoretical research and clinical practice of Holistic Integrative Medicine. He was the first awardee of the Prize “French National Academy of Medicine-Servier”. As an editor-in-chief he has authored 31 books on gastroenterology and oncology and has published more than 600 peer review articles on international journals.

Pat Furlong is the Founding President and CEO of Parent Project Muscular Dystrophy (PPMD), the largest nonprofit organization in the United States solely focused on Duchenne muscular dystrophy (Duchenne). Their mission is to end Duchenne. They accelerate research, raise their voices in Washington, demand optimal care for all young men, and educate the global community.

Ken Getz is the Executive Director and a Professor at the Tufts Center for the Study of Drug Development, Tufts University School of Medicine. He is also the chairman of CISCRP – a nonprofit organization that he founded to educate and raise public and patient awareness of the clinical research enterprise. A well-known speaker at conferences, symposia, universities, investor meetings and corporations, Ken also holds a number of board appointments in the private and public sectors. He received an MBA from the J.L. Kellogg Graduate School of Management at Northwestern University and a bachelor’s degree, Phi Beta Kappa, from Brandeis University.

Yves Juillet, MD, is the Secretary General of the Foundation of the French Academy of Medicine. He is a Member of the Academy of Medicine of France and Past President of the National Academy of Pharmacy. He was Chair of the EFPIA Scientific Technical and Regulatory Policy Committee, and also served as Chairman of the IFPMA Regulatory Policy and Technical Standards Committee. Dr. Juillet represented European industry as a Member of the ICH Steering Committee, co-chaired the ICH Global Cooperation Group, and was a Member of the official Registration Committee, and Transparency and Post-Marketing Committees, of the French Health Ministry. He is a Fellow of DIA and was the first DIA Board President from Europe.

Alastair Kent OBE was the Director of Genetic Alliance UK (the UK alliance of 200 patient groups, supporting all those affected by genetic conditions) for almost 25 years. He has been a member of many committees and working groups and has lectured and published on a wide range of issues relevant to patient and family needs and expectations. Alastair was made OBE for services to health care in 2011, and elected a Fellow of the Royal Society of Arts in 2017. Since retiring, Alastair has continued to work on behalf of patients and families affected by rare and genetic diseases. He is currently co-chair of the UK Rare Disease Policy Board at the Department of Health and Social Care and Chair of the Rare Diseases Advisory Group for NHS England.

Amy M. Miller, PhD, is President of the PhRMA Foundation, a leading independent nonprofit that funds foundational academic research advancing drug delivery, drug discovery, translational medicine, health equity, and value-driven health care. Dr Miller has held nonprofit leadership roles for nearly 20 years. Before joining the PhRMA Foundation, she served as President & CEO of the Society for Women’s Health Research (SWHR), and prior to that, she was EVP of the Personalized Medicine Coalition. Before entering nonprofit management, Dr Miller worked in government both within the NIH and as an AAAS legislative fellow and policy adviser to Sen. Jay Rockefeller (D-WV).

Dr. Mullin is Associate Center Director for Strategic Initiatives. She leads efforts including Patient-Focused Drug Development, Rare Disease Cures Accelerator, and CDER’s International Program. She leads the FDA delegation to ICH and currently chairs the ICH Management Committee. She led FDA negotiations for 2017 reauthorization of the Prescription Drug User Fee Act and also led the 2002, 2007 and 2012 PDUFA reauthorization cycles providing $1B in annual funding.  She received the 2019 Reagan-Udall Foundation Leadership Award for Innovations in Regulatory Science, US Food and Drug Law Institute 2017 Distinguished Service and Leadership Award, 2011 Presidential Rank Award for Distinguished Service, for Meritorious Service in 2006. 

Dr. Sato joined the Pharmaceuticals and Medical Devices Agency (PMDA) in 1998, and she is currently the Office Director for the Office of International Programs. She has work experiences in new drug review for 11 yrs, risk management for 3 yrs, and international area for 6 yrs. She also worked in U.S. FDA as a guest reviewer from 2002-2003, and in EMA as the Japan Liaison Officer from 2012-2014. She is actively involved in many academic societies, and contribute them as counselor, committee member, and a board member.

Jessica is a Patient Engagement leader who brings to Legacy Health Strategies a combined acumen of medicine and law, together with innovative thinking, to drive the culture change of increasing patient perspectives in medical product development to result in mutually beneficial outcomes for patients and industry. She is known as a credible and trusted thought-leader and collaborator, bringing novel solutions, digital strategies, and patient-centered approaches to biotech, med tech and pharmaceutical industries and across multi-stakeholder groups. She has deep knowledge of the pharmaceutical industry from leadership positions at GlaxoSmithKline and Takeda where she focused on building patient perspectives into the process of R&D.

Jeffrey W. Sherman, MD, FACP, is CMO and EVP at Horizon Therapeutics. Jeff has more than 30 years of biopharmaceutical industry experience at IDM Pharma, Takeda Global Research and Development, NeoPharm, Searle/Pharmacia, and Squibb/Bristol-Myers Squibb. He, a Past Chairperson of the Board of Directors of DIA, has served as DIA Annual Meeting Chair, received the DIA Outstanding Service Award, and served as DIA liaison to the FDA Clinical Trial Transformation Initiative (CTTI) Steering Committee, as well is an inaugural DIA Fellow. Jeff is also a member of the Global Genes Medical and Scientific Advisory Board and serves on the Board of Advisors of the Center for Information and Study on Clinical Research Participation (CISCRP).

Dr. Summar is well-known for his pioneering work in caring for children diagnosed with rare diseases. He joined Children’s National in 2010 from Vanderbilt University. At Children’s National he leads the Division of Genetics and Metabolism, currently the largest known clinical division seeing over 8000 patients a year with rare diseases. Dr. Summar’s laboratory works on both devices and treatments for patients with genetic diseases and adapting knowledge from rare diseases to mainstream medicine. His work has resulted in new drugs in FDA trials for patients with congenital heart disease. His laboratory is best known for its work in the rare diseases affecting nitrogen and ammonia metabolism.

Rebecca Vermeulen, RPh, brings a variety of experiences to her role as VP of Strategy for Patients and Society, Product Development, at Hoffman La Roche. She has served in numerous functions including Medical Affairs, Clinical Research, Sales, Medical Communications, Medical Science Liaisons, Patient Partnership, Digital Health, and Six Sigma, in her 28 years of healthcare industry experience, and has been responsible for creating global standards for information exchange with healthcare professionals and patients. Rebecca is currently Chair of the DIA Board of Directors, Chair of the Healthcare Businesswomen’s Association Corporate Board of Directors, and serves on the Patient Focused Medicine Development Advisory Committee.

Cynthia L. Verst, PharmD, MS, is President of Design and Delivery Innovation for R&D Solutions at IQVIA, responsible for accelerating growth through innovative solutions powered by rich data assets, advanced predictive analytics, integrated technology capabilities, and deep domain expertise to develop actionable insights that drive better clinical research outcomes. Dr. Verst has been named one of the Top Women in Biotech by FierceBiotech, and was the 2019 Board of Directors’ Chairman of the Association of Clinical Research Organizations. Dr. Verst earned her PharmD and Bachelor’s degree in Pharmacy from the University of Cincinnati, and her Master’s degree in Structural and Cellular Biology from the University of Illinois.