Council Members

The members on the all-volunteer Council represented all different sectors in the rare space.  The creators of Act 14 specifically required that those in the medical, biopharmaceutical, research, and insurance arenas work closely with patients, patient advocacy groups, and patients of rare to ensure that all areas of impact on Pennsylvania’s rare community are at the table.  Their role is outlined clearly in the legislation “to act as the advisory body on rare diseases to the General Assembly and to all relevant State and private agencies that provide services to, or are charged with the care of, individuals with rare diseases.” (Act of July 7, 2017 P.L. 284, No. 14).

Knowledge is power and the Council will endeavor to provide it to both the Commonwealth and its citizens. The Council will hope to act upon a common phrase within the rare disease community: “Out of the darkness ... into the light.”

The Council recognizes the challenges before them and understands the Council will not be able to be all things to all people but are resolved in their mission “to improve the quality of life for all those affected by rare diseases in Pennsylvania.”

STEERING COMMITTEE
Chair

Marie Conley

Founder, The Conley Cushing's Disease Fund
Vice Chair

Anna Payne

Cystic Fibrosis Patient
Treasurer

William C. Welch, MD, FACS, FICS

Chair, Department of Neurosurgery, Pennsylvania Hospital
Secretary

Jennifer H. Wescoe, MEd, NCC

Executive Director & Founder, Wescoe Foundation for Pulmonary Fibrosis
COUNCIL MEMBERS

Bret Yarczower, MD, MBA

Senior Medical Director, Health Services Operations

Can Ficicioglu, MD, PhD

Director of the Newborn Metabolic Screening Program and Lysosomal Storage Disease Center, Children's Hospital of Philadelphia

Connie Deline, MD

Vice-President, Chair, Medical Advisory Board, Spinal CSF Leak Foundation

David K. Kelley, MD, MPA

Chief Medical Officer, Pennsylvania Department of Human Services’ Office of Medical Assistance Programs

David Knouft

Vice President, U. S. Market Access, Harmony Biosciences

Evelyn O. Talbott, DrPH, MPH

Epidemiologist and Professor, Department of Epidemiology, Graduate School of Public Health, University of Pittsburgh

Jerry Vockley, MD, PhD

Chief of Medical Genetics, UPMC Children's Hospital of Pittsburgh

Jessica Deary

Patient Speaker; Individual Patient Advocate; Legislative Ambassador

Jodie M. Vento, MGC, CGC

Assistant Professor of Human Genetics and the Genetic Counseling Training Program Director at the University of Pittsburgh

John V. Tommasini, JD

Director of Legislative Affairs, Pennsylvania Medical Society

Joseph Coyne MEd, LBSC

Executive Director, Garrett the Grand, Batten Fighter

Judy Norris Himes

Senior Vice President & Chief Nursing Officer

Leo Heitlinger, MD, FAAP

Pediatric Gastroenterologist, St Luke’s Pediatric Gastroenterology

Megan Barbour

Policy Director, Pennsylvania Insurance Department (PID)

Nicholas DeGregorio, MD, FACP, MMM

Senior Medical Director, UPMC for You

Nick Slotterback

Health and Physical Education Advisor, Pennsylvania Department of Education

Patrick Collins

Senior Director for North American Healthcare Policy and External Affairs, CSL Behring

Peter Blank

Executive Policy Specialist, Pennsylvania Department of Health

Sharon O’Shaughnessy

Narcolepsy patient with Cataplexy; Advocacy Chair, Narcolepsy Network; Member, Avadel Pharmaceuticals Patient Advisory Group

Stephanie Fischer

Patient Advocate
DATA

1.2 million Pennsylvanians live with a rare disease.