NEBDAC & State Advocacy

New England Bleeding Disorders Advocacy Coalition

In 2016, the New England Bleeding Disorders Advocacy Coalition (NEBDAC) formed to address a key missing infrastructure: a collaborative advocacy effort across all six states in our region. NEBDAC’s Mission is to empower our community with tools, training, and resources to become an effective network that will champion bleeding disorder quality of life initiatives in all six New England states.

The coalition is comprised of an advocacy coordinator, one to three volunteer State Leads from each state, representatives from the National Bleeding Disorders Foundation (NBDF) and the Hemophilia Federation of America (HFA), and the executive director of the New England Hemophilia Association (NEHA). NEHA serves as the direct contact and manager of the NEBDAC Advocacy Coordinator.

Advocacy News

Each quarter, we publish an email Advocacy Update. This features legislative updates from each New England state, federal policy updates, advocacy news, and more. Read our recent Advocacy Updates:

To receive our Advocacy Update in your inbox, please email Brandon Greene, NEHA’s Senior Manager of Marketing and Communications, at [email protected].

State Leads

Our advocacy efforts are strong in all six New England states. These efforts are guided by NEBDAC, but the work comes from State Leads and volunteer Ambassadors who reside in each state.

State Leads are volunteer leaders who participate in NEBDAC’s monthly calls and serve as the primary points of contact on advocacy issues for members of the bleeding disorders community in their respective state. Each state has between one and three State Leads, depending on their needs and interest of community members.

  • Connecticut: Alissa DeJonge & Jennifer Banks
  • Maine: Nicholas McRae
  • Massachusetts: Ann Marie Minichiello & Ziva Mann
  • New Hampshire: Susi von Oettingen & Mary and Scott Fitzpatrick
  • Rhode Island: Jen Choquette
  • Vermont: Mike Dowling

Interested in becoming a state lead? Email Joe Zamboni, NEBDAC’s Advocacy Coordinator, at [email protected] to learn more about what this role entails and to begin your work.

Volunteer As An Advocate

Volunteers are always needed to help move our advocacy work forward. Community members who wish to volunteer with our advocacy efforts can do a number of tasks, like planning advocacy get togethers, contacting lawmakers or community members to help implement legislation to benefit our community, sharing your story to raise awareness, and more.

Our State Leads and the NEHA Staff will always be there to help you every step of the way. If you are interested in getting involved with our advocacy efforts, click below to submit our volunteer form.

Volunteer As An Advocate

Ways To Get Involved With State Advocacy

What is legislative advocacy?

Legislative Advocacy is the act of influencing state and federal lawmakers to pass legislation that supports our goals or to oppose legislation that is harmful to our community.

Why can you make a difference as a legislative advocate?

Legislators/candidates for public office want to be elected.  As a registered voter, you have the power to vote for them or their opponent.

Use your influence and let them know what you think about pending legislation that affects you and your family.

Lists of registered voters and their addresses are public information, therefore legislative office staff will know if you are a constituent and a registered voter.

How can I contact my legislator?

You can contact your legislator by writing a letter, sending an email, telephoning, or visiting in person.  Please note that meeting with an aide or staff person can be just as productive as meeting with your legislator.  Don’t be offended if your legislator is not available for the meeting.

Click on the below state to find out the contact information for your legislator.

When contacting my legislator about a bill, what information should I include?

  • Your name, street address, and phone number
  • Bill number
  • Reasons you are asking him/her to support/oppose the bill
  • Personal anecdotes if applicable, i.e. how the bill would affect you if passed into law
  • Action you are requesting of him/her, such as to vote for a bill, to urge a Committee to report it out favorably, etc.

Is there anything else I should know in order to be an effective legislative advocate?

  •  When a legislator or his/her aide asks you a question to which you don’t know the answer, tell them you will get back to him/her with the answer, and be sure to do so.
  • When asking your legislator to act on a bill, be sure to follow up to find out his/her position and if s/he took the action you requested.
  • When a legislator does something you like, thank him/her.