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Rare Disease Advisory Council

Policy Area

Advisory Councils and Working Groups

Purpose

The rare disease advisory council shall advise the governor, the general court and the department on the incidence of rare disease within the commonwealth and the status of the rare disease community. To achieve its purpose, the advisory council shall: (i) coordinate the performance of the rare disease advisory council's duties with those of other rare disease advisory bodies, community-based organizations and other public and private organizations within the commonwealth for the purpose of ensuring greater cooperation regarding the research, diagnosis and treatment of rare diseases. The coordination shall require, when appropriate: (A) disseminating the outcomes of the advisory council's research, identified best practices and policy recommendations; and (B) utilizing common research collection and dissemination procedures; (ii) using existing publicly available records and information, undertake a statistical and qualitative examination of the prevalence and causes of rare disease to develop a profile of the social and economic burden of rare disease in the commonwealth; (iii) receive and consider reports and testimony from expert individuals, the department, community-based organizations, voluntary health organizations, health care providers and other public and private organizations recognized as having expertise in rare disease care, to learn about their contributions to rare disease care and possibilities for the improvement of rare disease care in the commonwealth; (iv) develop methods to publicize the profile of the social and economic burden of rare disease in the commonwealth to ensure that the public and health care providers are sufficiently informed of the most effective strategies for recognizing and treating rare disease; (v) determine the human impact and economic implications of early treatment of rare diseases versus delayed or inappropriate treatment of rare disease as it pertains to the quality of care, the quality of patients’ and their families’ lives and the economic burdens, including insurance reimbursements, rehabilitation, hospitalization and related services, on patients, families and the commonwealth; (vi) evaluate the current system of rare disease treatment and available public resources to develop recommendations to increase rare disease survival rates, improve quality of life and prevent and control risks of co-morbidities for rare disease, based on available scientific evidence; (vii) research and determine the most appropriate method for the commonwealth to collect rare disease data, including a database of all rare diseases identified in the commonwealth along with known best practices for care of said diseases and such additional information concerning these cases as the advisory committee deems necessary and appropriate to conduct thorough and complete epidemiological surveys of rare diseases, subject to all applicable privacy laws and protections; (viii) examine the feasibility of developing a rare disease information and patient support network in the commonwealth to aid in determining any genetic or environmental contributors to rare diseases; and (ix) develop and maintain a comprehensive rare disease plan for the commonwealth utilizing any information and materials received or developed by the advisory council pursuant to this subsection and that shall include information specifically directed toward the general public, state and local officials, state agencies, private organizations and associations and businesses and industries.

Legal Authority

Chapter 260 of the Acts of 2020
↓↓ Sort members table by selecting table header for Member, Seat Name, Appointing Authority, or Term End Date.
Rare Disease Advisory Council Board Members
Member↓↓Seat NameAppointing AuthorityTerm End Date
Christelle AchkarPhysician with Rare Disease Experience 2GovernorMay 7, 2027
Olaf BodamerPhysician with Rare Disease Experience 1GovernorJune 17, 2027
Dr. Charlotte BoneyHospital Administrator 2 - PediatricGovernorJune 17, 2024
Janis CreedonHouse Speaker 4House of Representatives-
Ms. Lisa DeckRepresentative of Rare Disease Organization 2GovernorMay 7, 2024
Dr. Andrew DwyerAcademic Research Institution 2GovernorMay 7, 2027
Ms. Julie GortzeRepresentative of Rare Disease Organization 1GovernorMay 7, 2027
Dr. Michael GreenAcademic Research Institution 1GovernorJune 17, 2024
Mr. Guadalupe Hayes-Mota18 or older with Rare Disease 2GovernorMay 7, 2024
Representative Hannah KaneHouse Member 2 (Minority Leader)House of Representatives-
Representative Jay LivingstoneHouse Member 1Ex Officio-
Mr. Jeff R. LivingstoneBiotechnology and Scientific Community 1GovernorMay 7, 2024
Ms. Alexsandra MahadyRare Disease CaregiverGovernorMay 7, 2027
Ms. Jenn McNaryRepresentative of Rare Disease Organization 3GovernorJune 17, 2027
Ms. Tai PasquiniSenate Member 2 (Minority Leader )Senate-
Asma RashidGenetic Counselor with Rare Disease ExperienceHouse of Representatives-
Mr. Robert E. SchultzBiotechnology and Scientific Community 2GovernorMay 5, 2027
Ms. Celia SegelED, Health Policy CommissionEx Officio-
Dr. Michael ShermanRepresentative of a Health PlanHouse of Representatives-
Ms. Glenda Thomas18 or older with Rare Disease 1GovernorMay 7, 2027
Dr. Ryan ThompsonHospital Administrator 1GovernorJune 30, 2024
Mr. Dylan TierneyCommissioner, DPHEx Officio-
Ms. Ann WesselDietician - Experience with Rare DiseaseGovernorMay 7, 2024
Dr. Ross ZafonteRepresentative of a Rehab FacilityHouse of Representatives-
-Senate Member 1Ex Officio-
-Pharmacist – Experience with Rare Disease DrugsSenate-
-GeneticistSenate-
-Nurse with Experience Treating Rare DiseaseSenate-
-Senate President 4Senate-