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SENATE AMENDED
PRIOR PRINTER'S NOS. 1784, 2011 PRINTER'S NO. 2148
THE GENERAL ASSEMBLY OF PENNSYLVANIA
HOUSE BILL
No. 1527
Session of
2025
INTRODUCED BY DAVIDSON, BIZZARRO, GLEIM, DELLOSO, FRANKEL,
RIVERA, GALLAGHER, NEILSON, CIRESI, WARREN, PIELLI, WEBSTER,
KHAN AND SANCHEZ, MAY 29, 2025
SENATOR CULVER, HEALTH AND HUMAN SERVICES, IN SENATE, AS
AMENDED, JULY 16, 2025
AN ACT
Amending the act of July 7, 2017 (P.L.285, No.14), entitled "An
act establishing the Rare Disease Advisory Council and
providing for its powers and duties; and providing for duties
of the Department of Health, the Insurance Department, the
Department of Human Services and the Department of
Education," further providing for establishment and
membership and for expiration.
REENACTING AND AMENDING THE ACT OF JULY 7, 2017 (P.L.285,
NO.14), ENTITLED "AN ACT ESTABLISHING THE RARE DISEASE
ADVISORY COUNCIL AND PROVIDING FOR ITS POWERS AND DUTIES; AND
PROVIDING FOR DUTIES OF THE DEPARTMENT OF HEALTH, THE
INSURANCE DEPARTMENT, THE DEPARTMENT OF HUMAN SERVICES AND
THE DEPARTMENT OF EDUCATION."
The General Assembly of the Commonwealth of Pennsylvania
hereby enacts as follows:
Section 1. Section 3(b) of the act of July 7, 2017 (P.L.285,
No.14), known as the Rare Disease Advisory Council Act, is
amended by adding paragraphs to read:
Section 3. Establishment and membership.
* * *
(b) Members.--The advisory council shall consist of the
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following members:
* * *
(5) An individual appointed by the Majority Leader of
the Senate.
(6) An individual appointed by the Minority Leader of
the Senate.
(7) An individual appointed by the Majority Leader of
the House of Representatives.
(8) An individual appointed by the Minority Leader of
the House of Representatives.
* * *
Section 2. Section 7 of the act is amended to read:
Section 7. Expiration.
This act shall expire June 30, [2025] 2028.
Section 3. This act shall take effect immediately.
SECTION 1. SECTIONS 1 AND 2 OF THE ACT OF JULY 7, 2017
(P.L.285, NO.14), KNOWN AS THE RARE DISEASE ADVISORY COUNCIL
ACT, ARE REENACTED TO READ:
SECTION 1. SHORT TITLE.
THIS ACT SHALL BE KNOWN AND MAY BE CITED AS THE RARE DISEASE
ADVISORY COUNCIL ACT.
SECTION 2. DEFINITIONS.
THE FOLLOWING WORDS AND PHRASES WHEN USED IN THIS ACT SHALL
HAVE THE MEANINGS GIVEN TO THEM IN THIS SECTION UNLESS THE
CONTEXT CLEARLY INDICATES OTHERWISE:
"ADVISORY COUNCIL." THE RARE DISEASE ADVISORY COUNCIL
ESTABLISHED IN SECTION 3.
"DEPARTMENT." THE DEPARTMENT OF HEALTH OF THE COMMONWEALTH.
"RARE DISEASE." A DISEASE OR CONDITION THAT AFFECTS FEWER
THAN 200,000 INDIVIDUALS LIVING IN THE UNITED STATES.
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"SECRETARY." THE SECRETARY OF HEALTH OF THE COMMONWEALTH.
SECTION 2. SECTION 3 OF THE ACT IS REENACTED AND AMENDED TO
READ:
SECTION 3. ESTABLISHMENT AND MEMBERSHIP.
(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
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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.
(5) AN INDIVIDUAL APPOINTED BY THE MAJORITY LEADER OF
THE SENATE.
(6) AN INDIVIDUAL APPOINTED BY THE MINORITY LEADER OF
THE SENATE.
(7) AN INDIVIDUAL APPOINTED BY THE MAJORITY LEADER OF
THE HOUSE OF REPRESENTATIVES.
(8) AN INDIVIDUAL APPOINTED BY THE MINORITY LEADER OF
THE HOUSE OF REPRESENTATIVES.
(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
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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.
SECTION 3. SECTIONS 4, 5 AND 6 OF THE ACT ARE REENACTED TO
READ:
SECTION 4. PURPOSE AND DUTIES.
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(A) PURPOSE.--THE PURPOSE OF THE ADVISORY COUNCIL IS TO:
(1) COORDINATE STATEWIDE EFFORTS FOR THE STUDY OF THE
INCIDENCE AND PREVALENCE OF RARE DISEASES WITHIN THIS
COMMONWEALTH AND THE STATUS OF THE RARE DISEASE COMMUNITY.
(2) 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.
(3) COORDINATE THE PERFORMANCE OF THE ADVISORY COUNCIL'S
DUTIES WITH THOSE OF OTHER RARE DISEASE ADVISORY BODIES AND
COMMUNITY-BASED ORGANIZATIONS AND OTHER PUBLIC AND PRIVATE
ORGANIZATIONS WITHIN THIS COMMONWEALTH FOR THE PURPOSE OF
ENSURING GREATER COOPERATION BETWEEN THE ENTITIES WITHIN THIS
COMMONWEALTH AND FEDERAL AGENCIES REGARDING THE RESEARCH,
DIAGNOSIS AND TREATMENT OF RARE DISEASES. FOR PURPOSES OF
THIS PARAGRAPH, FEDERAL AGENCIES MAY INCLUDE, BUT ARE NOT
LIMITED TO, THE NATIONAL INSTITUTES OF HEALTH AND THE FOOD
AND DRUG ADMINISTRATION. THE COORDINATION SHALL REQUIRE, WHEN
APPROPRIATE:
(I) DISSEMINATING THE OUTCOMES OF THE ADVISORY
COUNCIL'S RESEARCH, IDENTIFIED BEST PRACTICES AND POLICY
RECOMMENDATIONS.
(II) UTILIZING COMMON RESEARCH COLLECTION AND
DISSEMINATION PROCEDURES.
(B) DUTIES.--THE DUTIES OF THE ADVISORY COUNCIL ARE TO:
(1) RESEARCH AND DETERMINE THE MOST APPROPRIATE METHOD
TO COLLECT RARE DISEASE DATA, AND INFORMATION CONCERNING
INDIVIDUALS WITH RARE DISEASES, AS THE ADVISORY COUNCIL DEEMS
NECESSARY AND APPROPRIATE TO CONDUCT COMPREHENSIVE SURVEYS OF
RARE DISEASES DIAGNOSED IN THIS COMMONWEALTH, SUBJECT TO ALL
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APPLICABLE PRIVACY LAWS AND PROTECTIONS.
(2) ENSURE THAT THE DUTIES DESCRIBED IN SUBSECTION (A)
(1) ARE CARRIED OUT IN A MANNER THAT IS COORDINATED AND
INTEROPERABLE WITH OTHER SIMILAR RESEARCH BEING CONDUCTED AT
THE FEDERAL AND STATE LEVEL.
(3) RESEARCH AND IDENTIFY PRIORITIES RELATING TO THE
QUALITY AND COST EFFECTIVENESS OF AND ACCESS TO TREATMENT AND
OTHER SERVICES PROVIDED TO INDIVIDUALS WITH RARE DISEASES IN
THIS COMMONWEALTH AND DEVELOP POLICY RECOMMENDATIONS ON THOSE
ISSUES.
(4) IDENTIFY BEST PRACTICES IN OTHER STATES AND AT THE
NATIONAL LEVEL FOR RARE DISEASE MANAGEMENT, MONITORING AND
SURVEILLANCE, EDUCATION, DETECTION, DIAGNOSIS, INFORMATION
AND CARE TO IMPROVE THESE FUNCTIONS AND CAPABILITIES RELATIVE
TO RARE DISEASES WITHIN THIS COMMONWEALTH.
(5) DEVELOP EFFECTIVE STRATEGIES TO RAISE PUBLIC
AWARENESS OF RARE DISEASES WITHIN THIS COMMONWEALTH.
(6) COORDINATE THE DEVELOPMENT OF A TASK FORCE,
COMPRISED OF MEMBERS OF THE ADVISORY COUNCIL AND OTHER
INDIVIDUALS AS MAY BE NECESSARY AND APPROPRIATE TO FACILITATE
THE DEVELOPMENT AND PUBLICATION OF THE REPORT SPECIFIED IN
SECTION 6(B).
(C) CONSTRUCTION.--NOTHING IN THIS ACT SHALL BE CONSTRUED TO
PROHIBIT THE ADVISORY COUNCIL FROM ISSUING INTERIM REPORTS OR
TAKING INTERIM ACTIONS SHOULD THESE SEEM APPROPRIATE.
SECTION 5. FUNDING.
(A) REPORT TO GENERAL ASSEMBLY.--PRIOR TO APPOINTING MEMBERS
OF THE ADVISORY COUNCIL, THE DEPARTMENT SHALL RESEARCH AND
REPORT TO THE GENERAL ASSEMBLY WITHIN 30 DAYS OF THE EFFECTIVE
DATE OF THIS SECTION EXISTING SOURCES OF FUNDING THAT MAY BE
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USED TO FINANCE THE FORMATION AND OPERATION OF THE ADVISORY
COUNCIL.
(B) GRANT AND OTHER FUNDING.--THE ADVISORY COUNCIL SHALL
APPLY FOR, AND IS AUTHORIZED TO ACCEPT, A GRANT OF MONEY FROM
THE FEDERAL GOVERNMENT, A PRIVATE FOUNDATION OR ANY OTHER SOURCE
WHICH MAY BE AVAILABLE FOR PROGRAMS RELATED TO RARE DISEASES.
SECTION 6. REPORTS.
(A) PRELIMINARY REPORT.--WITHIN 12 MONTHS OF THE EFFECTIVE
DATE OF THIS SECTION, THE ADVISORY COUNCIL SHALL DELIVER TO THE
HEALTH AND HUMAN SERVICES COMMITTEE OF THE SENATE AND THE HEALTH
COMMITTEE OF THE HOUSE OF REPRESENTATIVES A PRELIMINARY REPORT
ON THE WORK OF THE ADVISORY COUNCIL. THE REPORT SHALL BE MADE
AVAILABLE TO THE PUBLIC. THE REPORT SHALL INCLUDE A SUMMARY OF
THE ACCOMPLISHMENTS OF THE ADVISORY COUNCIL SINCE ITS FORMATION
AND THE STATUS OF ITS WORK IN PREPARATION OF THE REPORT REQUIRED
UNDER SUBSECTION (B).
(B) REPORT.--WITHIN TWO YEARS OF THE EFFECTIVE DATE OF THIS
SECTION, THE ADVISORY COUNCIL SHALL DELIVER TO THE HEALTH AND
HUMAN SERVICES COMMITTEE OF THE SENATE AND THE HEALTH COMMITTEE
OF THE HOUSE OF REPRESENTATIVES A COMPREHENSIVE REPORT. THE
REPORT SHALL BE MADE AVAILABLE TO THE PUBLIC. THE REPORT SHALL
INCLUDE THE FOLLOWING:
(1) THE INCIDENCE AND PREVALENCE OF RARE DISEASES WITHIN
THIS COMMONWEALTH.
(2) THE NEEDS OF THE RARE DISEASE COMMUNITY WITHIN THIS
COMMONWEALTH AND THE ACTIONS NECESSARY AND FEASIBLE TO
ADDRESS THOSE NEEDS.
(C) BIENNIAL REPORTS.--THE ADVISORY COUNCIL SHALL REPORT
BIENNIALLY TO THE DEPARTMENT, THE HEALTH AND HUMAN SERVICES
COMMITTEE OF THE SENATE AND THE HEALTH COMMITTEE OF THE HOUSE OF
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REPRESENTATIVES ON THE ACTIVITIES OF THE ADVISORY COUNCIL AND
ITS FINDINGS AND RECOMMENDATIONS ON ISSUES RELATING TO THE
MANAGEMENT, MONITORING AND SURVEILLANCE, EDUCATION, DETECTION,
DIAGNOSIS, INFORMATION AND CARE REGARDING RARE DISEASES IN THIS
COMMONWEALTH, INCLUDING THE QUALITY AND COST EFFECTIVENESS OF
CARE, ACCESS TO TREATMENT AND OTHER RELEVANT SERVICES FOR
INDIVIDUALS AFFECTED BY RARE DISEASES.
SECTION 4. SECTION 7 OF THE ACT IS REENACTED AND AMENDED TO
READ:
SECTION 7. EXPIRATION.
THIS ACT SHALL EXPIRE [JUNE 30, 2025] JULY 1, 2028.
SECTION 5. SECTION 8 OF THE ACT IS REENACTED TO READ:
SECTION 8. EFFECTIVE DATE.
THIS ACT SHALL TAKE EFFECT IMMEDIATELY.
SECTION 6. THIS ACT SHALL APPLY RETROACTIVELY TO JUNE 30,
2025.
SECTION 7. THIS ACT IS A CONTINUATION OF THE ACT OF JULY 7,
2017 (P.L.285, NO.14), KNOWN AS THE RARE DISEASE ADVISORY
COUNCIL ACT. EXCEPT AS OTHERWISE PROVIDED IN THIS ACT, ALL
ACTIVITIES INITIATED UNDER THE RARE DISEASE ADVISORY COUNCIL ACT
SHALL CONTINUE AND REMAIN IN FULL FORCE AND EFFECT AND MAY BE
COMPLETED UNDER THIS ACT. ORDERS, REGULATIONS, RULES AND
DECISIONS WHICH WERE MADE UNDER THE RARE DISEASE ADVISORY
COUNCIL ACT AND WHICH ARE IN EFFECT ON THE EFFECTIVE DATE OF
THIS ACT SHALL REMAIN IN FULL FORCE AND EFFECT UNTIL REVOKED,
VACATED OR MODIFIED UNDER THIS ACT. CONTRACTS, OBLIGATIONS AND
COLLECTIVE BARGAINING AGREEMENTS ENTERED INTO UNDER THE RARE
DISEASE ADVISORY COUNCIL ACT ARE NOT AFFECTED NOR IMPAIRED BY
THIS ACT.
SECTION 8. THIS ACT SHALL TAKE EFFECT IMMEDIATELY.
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