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Please join Massachusetts Rare Action Network for Rare Disease Day in Boston on Wednesday, February 28, 2018 from 9:00am-12:30pm at the UMass Club at 1 Beacon Street, 32nd floor, Boston MA. This is an opportunity for patients, families, caregivers, medical professionals and industry representatives to come together and educate state legislators and their staff about rare diseases and the challenges patients and their families face in the state.


To view or download the event invite click here!


Jen Melanson
Massachusetts State Co-Ambassador

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Alan Holbrook
Massachusetts State Co-Ambassador

RAN_Megephone_RGBWould you like to volunteer to assist in hosting a local community awareness event? Do you have an opportunity for Massachusetts’ Rare Action Network to attend your event? Contact your State Ambassadors today and learn more. Please check back regularly for news of upcoming events and activities in Massachusetts.

In order to make meaningful change in the lives of rare disease patients and their families in the state of Massachusetts, we need you! Become active with the Rare Action Network by joining and utilizing the resources available on this website to take action and create change.

State Report Card

This Report Card serves as an evaluation of the state progress in implementing policies pertinent to the rare disease community. With it, NORD hopes to provide a road map for the rare disease community of where each state can improve and, ultimately, push forward the discussion on rare disease public policy.

MA State Report Card (2016)
Medical Foods 95%
Prescription Drug Cost Sharing 0%
Medicaid/CHIP Eligibility 90%
Newborn Screening: RUSP Secondary Conditions 81%
Biosimilar Prescriber Communication 100%
Step-Therapy Protection 0%

Scoring for State Policies

90%-100% = A

80%-89% = B

70%-79% = C

60%-69% = D

0%-59% = F

State Information

Gary D. Anderson, Acting Commissioner

Office of Consumer Affairs and Business Regulation (OCABR)
Massachusetts Division of Insurance
1000 Washington Street, 8th Floor
Boston, Massachusetts 02118-6200


In order to get the issues that affect your life addressed, connect with your state representative by using the tool on our website.

Click Here

Complaint Submission- Mail this form to:

1000 Washington Street
Suite 810
Boston, MA 02118

Email for Assistance:
617-521-7794 or 877-563-4467

State Health Insurance Consumer Assistance Program
Kathryn Bicego, Consumer Assistance Program Manager

Massachusetts Consumer Assistance Program
30 Winter Street, 10th Floor
Boston, MA 02108
617-350-7279 or 800-272-4232

Consumer Assistance Program Website

Kaiser State Exchange Profile
State Reforum State Profile


MassHealth Enrollment Center – Chelsea
45-47 Spruce Street
Chelsea, MA 02150

Email for Assistance:
1-888-665-9993 or 1-888-665-9997

Medicaid Website
Eligibility Requirements

Children’s Health Insurance Program (CHIP)
Children’s Health Coverage Resources

Show pride for rare in your state
Show pride for rare in your state

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