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§ 6263. Establishment and membership

Purdon's Pennsylvania Statutes and Consolidated StatutesTitle 35 P.S. Health and SafetyEffective: July 7, 2017

Purdon's Pennsylvania Statutes and Consolidated Statutes
Title 35 P.S. Health and Safety (Refs & Annos)
Chapter 32B. Rare Disease Advisory Council Act
Effective: July 7, 2017
35 P.S. § 6263
§ 6263. Establishment and membership
Currentness
(a) Establishment.--The Rare Disease Advisory Council is established.
(b) Members.--The advisory council shall consist of the following members:
(1) The secretary or a designee authorized to act on behalf of the secretary.
(2) The heads of State agencies that may be concerned with the provision of care to persons with rare diseases or designees authorized to act on behalf of the agency heads. At a minimum, members under this paragraph shall include the Secretary of Human Services and the Secretary of Education or their respective designees.
(3) The Insurance Commissioner or a designee authorized to act on behalf of the Insurance Commissioner.
(4) Public members to be appointed by the secretary, who shall include:
(i) Three physicians licensed to practice in this Commonwealth who have expertise in the diagnosis and management of patients with rare diseases, one of whom shall be a pediatrician who provides care to children with rare diseases.
(ii) Two registered professional nurses or nurse practitioners licensed in this Commonwealth who have expertise in providing care to patients with rare diseases.
(iii) An epidemiologist licensed in this Commonwealth who has expertise in the incidence, prevalence and control of rare diseases.
(iv) Two representatives of hospitals in this Commonwealth, one of which must be a research hospital.
(v) Two representatives of the health insurance industry.
(vi) Two representatives involved in the biopharmaceutical industry.
(vii) Two representatives of the scientific community who are engaged in rare disease research.
(viii) Two parents, each of whom has a child with a rare disease, not of the same family.
(ix) Two individuals with rare diseases.
(x) Representatives of two rare disease-specific patient organizations that operate within this Commonwealth.
(c) Additional members.--The advisory council may at any time advise the department on additional at-large appointments to the advisory council that may be necessary to carry out its duties. At-large appointees to the advisory council may serve on an ad hoc basis.
(d) Vacancies.--Vacancies in the membership of the advisory council shall be filled in the same manner as provided for the original appointments.
(e) Appointment of public members and chairperson.--The secretary shall appoint the public members of the advisory council and a chairperson of the advisory council within 60 days of the effective date of this section.
(f) Compensation.--The public members of the advisory council shall serve without compensation but may be reimbursed for travel and other miscellaneous expenses necessary to perform their duties within the limits of funds made available to the advisory council for its purposes. Reimbursement for expenses incurred by public members of the advisory council shall be provided by the department according to standard criteria currently in existence.
(g) Meetings.--The advisory council shall meet periodically, at a minimum of three times each year. A member may participate in a meeting by teleconference. The initial meeting of the advisory council shall be held within 90 days of the effective date of this section.
(h) Assistance of other government agencies.--The advisory council shall be entitled to call to its assistance and avail itself of the services of the employees of any State or local government agency as it may require and as may be available to it for its purposes.
(i) Staff.--The department may provide staff services to the advisory council, including providing a secretary to the advisory council.

Credits

2017, July 7, P.L. 285, No. 14, § 3, imd. effective.
35 P.S. § 6263, PA ST 35 P.S. § 6263
Current through 2023 Regular Session Act 7. Some statute sections may be more current, see credits for details.
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