Scott Schliebner

In addition to more than 25 years of clinical research experience, Scott has a Master’s degree in Public Health, a background in epidemiology and biostatistics, and has held leadership positions across the biotech, non-profit, and CRO spaces. In addition to his role at PRA, Scott co-leads Global Genes’ Rare Corporate Alliance, a coalition of rare disease industry stakeholders that are committed to collaboration between industry and patient communities to improve and expedite access to effective therapies for all rare patients. He is also a member of Uplifting Athletes’ Board of Directors, and he speaks and writes regularly on innovation within clinical research.

James E. Valentine

James E. Valentine is an Associate Attorney with Hyman, Phelps & McNamara, P.C., where he assists medical product industry and patient advocacy organization clients in a wide range of regulatory matters, including new drug and biologic development and approval issues.

Prior to joining the firm in 2014, Mr. Valentine worked for the U.S. Food and Drug Administration (FDA) Office of the Commissioner where he facilitated patient input in benefit-risk decision-making and served as a liaison to stakeholders on a wide range of regulatory policy issues. Mr. Valentine administered the FDA Patient Representative Program, facilitated stakeholder consultations during the reauthorization of PDUFA and MDUFA, helped launch the Patient-Focused Drug Development program, and developed the FDA Patient Network.

In 2019, he was recognized for his advocacy work, honored by Global Genes, an international non-profit rare disease patient advocacy organization, as a RARE Champion of Hope.

Mr. Valentine received his B.A. in Interdisciplinary Studies from the University of Maryland Baltimore County, M.H.S. in Health Policy from the Johns Hopkins School of Public Health, and J.D. with Health Law Certificate from the University of Maryland School of Law.

Joan A. Chambers

Joan is the Senior Director of Marketing & Outreach at the Center for Information & Study on Clinical Research Participation (CISCRP) where she supports their mission of raising awareness and understanding about clinical research and the important role it plays in public health. Joan’s experience spans 20+ years in the health life sciences and currently serves on the Board of Directors for Greater Gift, the US PharmaTimes Steering Committee for CROY, Steering Committee for Pharma Intelligence/Informa Clinical & Research Excellence Awards (CARE), Steering Committee for PopUp Star, and is an active member of the Association of Clinical Research Professionals (ACRP) and the Drug Information Association (DIA). She was previously on the Advisory Board for CISCRP for over 10 years. In the course of her career, she has published in clinical trade journals.

Lisa Schill

Lisa Schill is a rare disease patient advocacy consultant who specializes in connecting caregivers, families, researchers, support organizations, and government, to help support patients in the pursuit of advancing treatment options and patient outcomes. Lisa’s perspectives from personal experience, non-profit organizations, industry, and government provide organizations with broad, experiential insight and direction. 

Lisa has provided leadership and strategic guidance for the top rare disease advocacy organizations to tackle patient access challenges. Lisa has expanded and refined advocacy educational programs, created collaborative learning opportunities, managed major rare disease events and influenced federal legislation - all to accelerate treatment options and improve the lives of patients and families. 

Lisa voluntarily serves as Vice President of the RASopathies Network, a non-profit whose mission is to advance research of the RASopathies. She was a Principal Investigator for the 2015, 2017 and 2019 International Meetings on the Genetic Syndromes on the RAS/MAPk Pathway. These biennial meetings bring together the top experts in RASopathies research, clinicians and families from around the world to help further RASopathies research and foster collaboration. 

Brett Brackett

Brett is the General Manager and Director of Sports Impact at Uplifting Athletes. He has an innate passion for helping others and directs that passion towards the Rare Disease Community and using the platform of sports for social good. As a former Wide Receiver at Penn State University, Brett went undrafted out of college, but made it to the NFL with stops in Miami, Philadelphia, Jacksonville, Tennessee, and Seattle before his playing career came to an end following the 2016 season.

Brett began serving the Rare Disease Community in 2006 when he first volunteered with the Penn State Chapter of Uplifting Athletes and subsequently served as the Chapter President from 2007-2010. During that time, the Penn State Chapter raised $250,000 in support of the Rare Disease Community. In 2017, Brett joined the Uplifting Athletes’ staff full-time as the Chapter Manager. He has played an integral part in transitioning the organization into the current four program structure used to support those affected by rare diseases today.

Pamela Gavin

Pamela Gavin currently serves as Chief Strategy Officer at the National Organization for Rare Disorders (NORD). Her primary concerns in this position include NORD’s membership programs; patient support services, strategic business development and general operations. She joined NORD in 2010 after 13 years in positions focused on health care safety where she was chiefly responsible for implementing complex, multi- stakeholder programs aimed at improving patient-centric quality of care and mitigating risk of harm. As a consultant to the federal government, she received Special Citations from FDA’s Commissioner and CFSAN Director for outstanding leadership and teamwork implementing a new web-based portal for the reporting of pre-market and post- market safety data to FDA and NIH.

As Senior Director at the University of Pittsburgh Medical Center Pamela worked in an equity partner business unit, bringing new concepts and emerging technologies to market utilizing the UPMC enterprise to test, evaluate and develop products designed to improve healthcare delivery.

Pamela co-founded SafeCareTM Systems, LLC, which developed one of the country’s first patient safety management systems and served as director for RMF Strategies, a division of the Risk Management Foundation of the Harvard Medical Institutions responsible for the commercialization of data driven risk management solutions.