How can you help, you ask?
- Contact your State Representative and Senator and share your story of living and/or working with rare disease. Explain why you feel this bill will be beneficial and ask for support.
- Send in a letter of written testimony .
- You can plan to provide oral testimony at the next hearing or attend to show support for those who do and stand up for the bill itself.
Find your MA Representative here
Sample letter of testimony:
Testimony for Public Hearing
Public Health Committee
Town, State, Zip
HB3714, An Act to Create a Rare Disease Advisory Council.
Chairman Lewis, Chairman Hogan, Members of the Public Health Committee,
(Brief ask for support on this bill and why such a Council would be instrumental in determining solutions for RD stakeholders in the Commonwealth).
(Brief Own story) (Think 2 minute talk for whole document) xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx……………………………………………..
IF in agreement with proposed language changes,
Add: I request consideration for the following ammendments to the Bill as written:
(b)(1) Change language from specific specialties named to up to 15. (This change is reflection on CT’s Task Force delay in forming due to securing appropriate parties.
Remove specific named organizations and replace with up to 4 representatives from patient-based organizations that operate within the State. (This will allow fair representation).
(b) (2) Until such time that each vacancy can be appropriately filled, council may presume with at least 5 appointed representatives. (This will allow the Council to get started as they search for appropriate candidates)
Add: Upon or after the Advisory Council is first convened, the council may advise the Commissioner on additional at-large appointments to the council that may be necessary to carry out its duties. At-large appointments to the council may serve on an ad-hoc basis.
(12) Remove “Develop a registry of all rare diseases diagnosed within the commonwealth to aid in determining any genetic or environmental contributors to rare diseases” and substitute with a plan to share data such as, “Coordinate the performance of the council’s duties with other state rare disease advisory bodies, community-based organizations, and other public and private organizations for the purpose of ensuring greater cooperation between state and federal activities regarding the research, diagnosis, and treatment of rare diseases. Federal agencies may include, but are not exclusive to, the U.S. National Institutes of Health NIH), and the U.S. Food and Drug Administration (FDA). Such coordination shall require, when appropriate:
i. disseminating the council’s research, identified best practices, and policy recommendations; and
ii. the utilization of common research collection and dissemination procedures.
Offer thanks ...