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
Co-Chair

Jennifer H. Wescoe, MEd, NCC

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

April Adley, DNP, MHA, RN, CNML, NEA-BC

Vice President of Nursing Services for the Children’s Hospital and Women Health at Penn State Health Milton S. Hershey Medical Center

Bret Yarczower, MD, MBA

Senior Medical Director, Health Services Operations

David Knouft

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

Jerry Vockley, MD, PhD

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

Jodie M. Vento, MGC, CGC

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

Nicholas DeGregorio, MD, FACP, MMM

Senior Medical Director, UPMC for You

Patrick Collins

Vice President of Corporate Relations

Sharon O’Shaughnessy

Member, Avadel Pharmaceuticals Patient Advisory Group

Stephanie Fischer

Patient Advocate

Joseph Coyne Emeritus MEd, LBSC

Executive Director, Garrett the Grand, Batten Fighter

Karla White

Senior Director

Dr. Jared Hassler, MD.

Dr. Jared Hassler, MD.
State Agency Representatives

Debra L. Bogen, MD.

Acting Secretary

Khalid N. Mumin, Ph. D

PA Department of Education

Michael Humphreys

Acting Commissioner
STAFF

Dana Moore

Special Projects Consultant
DATA

1.2 million Pennsylvanians live with a rare disease.