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.
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, two volunteer State Leads from each state, representatives from the National Hemophilia Foundation (NHF) and the Hemophilia Federation of America (HFA), and the executive directors of the New England Hemophilia Association (NEHA) and the Hemophilia Alliance of Maine (HAM). NEHA serves as the direct contact and manager of the NEBDAC Advocacy Coordinator.
Advocacy News
Each month, we publish an Advocacy Update. This features legislative updates from each New England state, federal policy updates, advocacy news, and more. Read our most recent newsletters:
- March 2023 – Read newsletter here.
- Be An Advocate During Bleeding Disorders Awareness Month – Read email here.
- February 2023 – Read newsletter here.
- January 2023 – Read newsletter here.
To receive our Advocacy Update in your inbox, please email Brandon Greene, NEHA’s Marketing and Communications Manager, at [email protected].
State Leads
Our advocacy efforts are strong in each 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 two State Lead positions, though some remain vacant.
- Connecticut: Alissa DeJonge & Jennifer Banks
- Maine: Nicholas McRae & one position open
- Massachusetts: Ann Marie Minichiello & Ziva Mann
- New Hampshire: Susi von Oettingen & one position open
- Rhode Island: Jen Choquette & one position open
- Vermont: Mike Dowling & one position open
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.
Ambassadors
Volunteer Advocacy Ambassadors are people who opt-in to be read for action when a policy issue arises in their state that impacts the bleeding disorders community. Being an Ambassador is easy!
When an issue arises, your State Leads will contact you with detailed instructions about how you can help us. Usually, this entails sending an email to your local Senator or Representative, posting on social media, joining us at the State House to celebrate Bleeding Disorders Awareness Month, or meeting with their local senator or representative. Plus, our State Leads will always provide you with a sample post or email, or a template to help you get started!
Ways To Get Involved With State Advocacy
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 register to vote?
The process to register to vote differs in each state. Click on the below state to find out how to register to vote in your state. Note that some states require registration in advance of an election.
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.