Rare Disease Council
Purpose
There is hereby created in the executive branch of state government the Rare Disease Council (the Council) for the purpose of (i) advising the Governor and the General Assembly on the needs of individuals with rare diseases in the Commonwealth; (ii) identifying challenges that such individuals face, including delays in obtaining a diagnosis or the receipt of a misdiagnosis, shortages of medical specialists who can provide treatment, and lack of access to therapies and medication used to treat rare diseases; (iii) funding research related to rare diseases and the development of new treatments for rare diseases; and (iv) funding for supports for persons with rare diseases in the Commonwealth.
Term
No term information available
Composition
The Council shall have a total membership of 21 members that shall consist of 18 nonlegislative citizen members and three ex officio members. The Governor shall appoint a chairman and vice-chairman who shall be residents of the Commonwealth and shall not be employed by any federal or state government. Nonlegislative citizen members shall be appointed by the Governor and shall include, in addition to the chairman and the vice-chairman, one representative from an academic research institution in the Commonwealth that receives any grant funding for rare disease research; one geneticist licensed and currently practicing in the Commonwealth; one registered nurse or advanced practice registered nurse licensed and currently practicing in the Commonwealth, with experience in treating rare diseases; two physicians with expertise in rare diseases who are licensed and currently practicing medicine in the Commonwealth; one hospital administrator, or his designee, from a hospital in the Commonwealth that provides care to persons diagnosed with rare diseases; two persons who are 18 years of age or older who have been diagnosed with a rare disease; two caregivers of persons with a rare disease; two representatives of rare disease patient organizations operating in the Commonwealth; one licensed pharmacist with experience with drugs used to treat rare diseases; one representative from the biopharmaceutical industry; one representative from health plan companies; and one member from the scientific community who is engaged in rare disease research, which may include a medical researcher with experience conducting research on rare diseases. The Commissioner of Health, the Director of the Department of Medical Assistance Services, and the Superintendent of Public Instruction, or their designees, shall serve ex officio with nonvoting privileges. Ex officio members of the Council shall serve terms coincident with their terms of office.
Nonlegislative citizen members of the Council shall be citizens of the Commonwealth. Appointments to fill vacancies, other than by expiration of a term, shall be for the unexpired terms. Vacancies shall be filled in the same manner as the original appointments. After the initial staggering of terms, nonlegislative citizen members shall be appointed for a term of three years.
Ex officio members of the Council shall serve terms coincident with their terms of office. Appointments to fill vacancies, other than by expiration of a term, shall be for the unexpired terms. Vacancies shall be filled in the same manner as the original appointments. After the initial staggering of terms, nonlegislative citizen members shall be appointed for a term of four years.
Vacant Seats
| Representative from Health Plan Companies | 1 seat |
| Total seats available: 1 | |
Current Board Members
Judy Stecker
Representative of a Rare Disease Patient Organization Membership expires on 6/30/2026Mr. Gregory J. Josephs
Representative of a Rare Disease Patient Organization Membership expires on 6/30/2026Mrs. Elisabeth A. Scott
Caregiver of Persons with a Rare Disease Membership expires on 6/30/2026Elissa Pierson
Caregiver of a Person with a Rare Disease Membership expires on 6/30/2026Ms. Ijeoma E. Azubuko
Individual Diagnosed with a Rare Disease Membership expires on 6/30/2026James W. Fisher
Individual Diagnosed with a Rare Disease Membership expires on 6/30/2026Dr. Angela Wright Olmsted
Pharmacist Membership expires on 6/30/2027Dr. Sharon J Kopis
Registered Nurse or Advanced Practice Nurse Membership expires on 6/30/2027Gwen Traficant
Chair Membership expires on 6/30/2027Hermionne Johnson
Vice Chair Membership expires on 6/30/2027John Reynolds Feore
Representative from the Biopharmaceutical Industry Membership expires on 6/30/2028Michael J. Friedlander
Hospital Administrator Membership expires on 6/30/2028Dr. Stephen Rich
Member of the Scientific Community Membership expires on 6/30/2029Dr. Stephen Green
Physician with Expertise in Rare Diseases Membership expires on 6/30/2029Dr. Tiffany Kimbrough
Physician with Expertise in Rare Diseases Membership expires on 6/30/2029Christina Peroutka
Geneticist Membership expires on 6/30/2029