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. This is a joint effort between the New England Hemophilia Association (NEHA), Hemophilia Alliance of Maine (HAM), and Connecticut Hemophilia Society (CHS).
Executive Directors from the three bleeding disorders chapters in the New England region (New England Hemophilia Association, Hemophilia Alliance of Maine, Connecticut Hemophilia Society) serve together as an effective cooperative support system to NEBDAC’s programming.
The NEBDAC Coordinator leads the coalition in legislative and advocacy efforts in all six of the New England states. The New England Hemophilia Association serves as the direct contact and manager of the NEBDAC Advocacy Coordinator.
The Ambassador Program
The power of NEBDAC’s advocacy program lies with its “Ambassadors.” Ambassadors are community members who stay abreast of state policy issues and are responsible for taking action (attending meetings, contacting legislators, talking with the press) when there is an advocacy need. Each state has two volunteer State Leads that serve as the primary points of contact on advocacy issues for the community in their state. They support the Ambassadors in their advocacy efforts and recruit new volunteers in their local community. State Leads participate in monthly calls, and attend both BaCON and the Stakeholder Meeting.