The bill is sponsored by Representatives Hannah Kane and Joseph McKenna and once enacted establishes a Rare Disease Advisory Council in the Commonwealth. 

The mission of the council is to advise the Governor, General Court, and Department of Public Health on the incidence of rare disease in the Commonwealth and the status of rare disease in Massachusetts.

The advisory council will develop and maintain a rare disease plan for the Commonwealth to achieve the council’s mission.
Make-up and Administration of the Rare Disease Advisory Council:
  • 27 total members
            - 2 Senators and 2 Representatives (or designees)
            - Massachusetts Healthy Policy Commission Director (or designee)
            - 21 appointees of the Governor each with a background and expertise in rare disease, including representatives from: academic research institutions, physicians and nurses, hospital administrators, rare disease pediatric hospitals, rare disease advocacy organizations, health plan or accountable care organizations, biotechnology, pharmacists, genetic counselors, rehabilitation facilities for rare disease, rare disease patients and caregivers for rare disease patients
  • Council will meet at least quarterly
  • Council members shall serve 3 year terms and until their replacement is appointed

Duties of the Rare Disease Advisory Council:
  • Coordinate with other rare disease advisory bodies and organizations to ensure greater cooperation regarding the research, diagnosing and treatment of rare diseases
  • When appropriate, the council shall share and publish research, identified best practices and policy recommendations
  • Develop a profile of the social and economic burden of rare disease in the Commonwealth by examining the causes and prevalence of rare disease
  • Publicize the profile to ensure knowledge of effective strategies for treatment and care
  • Determine the human impact and economic implications of early treatment of rare diseases
  • Evaluate the current system of rare disease treatment to determine recommendations to increase survival rates, improve quality of life and prevent and control risk of co-morbidities for rare disease
  • Determine most appropriate method for the Commonwealth to collect rare disease data
  • Study the feasibility of establishing a rare disease information and patient support network
  • Develop and maintain a comprehensive rare disease plan for the Commonwealth

Legislation’s Impact: This bill seeks to educate individuals and draw attention to rare disease in the Commonwealth. The legislation gathers experts and stakeholders from various subsections of the rare disease community to develop a collective rare disease network. The bill creates a comprehensive rare disease plan to use as a framework for championing the rare disease community and making strides in tackling rare disease here in Massachusetts.

Rep Kane's story
Rep McKenna's story
Reps Kane and McKenna share about H.1934
HB. 1934 Sponsors 


Name:                                                         District/Address:

Hannah Kane                                              11th Worcester

Joseph D. McKenna                                    18th Worcester

Brian M. Ashe                                              2nd Hampden

Julian Cyr                                                    Cape and Islands

Shawn Dooley                                             9th Norfolk

Kimberly N. Ferguson                                 1st Worcester

Carole A. Fiola                                            6th Bristol

Colleen M. Garry                                         36th Middlesex

Anne M. Gobi                                              Worcester, Hampden,                    Hampshire and Middlesex

Jonathan Hecht                                           29th Middlesex

Bradley H. Jones, Jr.                                   20th Middlesex

David Henry Argosky LeBoeuf                    17th Worcester
​   
Paul McMurtry                                             11th Norfolk

Michael O. Moore                                        Second Worcester

Mathew J. Muratore                                     1st Plymouth

Elizabeth A. Poirier                                      14th Bristol

David M. Rogers                                          24th Middlesex

Paul A. Schmid, III                                       8th Bristol

Timothy R. Whelan                                      1st Barnstable
Rep McKenna sharing about the MA Rare Disease bill submission potential.
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Our hearing at the MA State House on October 8th, was very successful, thank you to everyone who came out to support H.1934! 
MA Representative Joseph McKenna providing testimony during the hearing.
Check out some of the testimonials given by RNE supporters during the hearing.