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).
Phase 1 - Collaboration. In April of 2016 a New England Leadership Summit was held in
Portsmouth, NH that brought together current and future leaders of the region to form a collaborative partnership to develop larger, longer, transformative and sustainable projects and programs. During that event, two areas were identified and given high level priority:
- Regular meetings among the Executive Directors (EDs) of the three chapters
- Form a collaborative advocacy coalition
Phase 2 - Cooperation. As the next phase to form a collaborative advocacy coalition,
a stakeholder meeting on October 12, 2016 in Dedham, MA was organized to bring together the
Executive Directors, Board Presidents, and advocacy leaders from NEHA, HAM, CHS, policy advisors from National Hemophilia Foundation (NHF), Hemophilia Federation of America (HFA), and industry state-based government affairs liaison. From this meeting, the NEBDAC formed. Each Executive Director from NEHA, HAM, and CHS appointed two state lead ambassadors to represent the New England region. In addition, NHF, HFA, and two representatives from the Hemophilia Treatment Centers (HTCs) sit on this coalition. Lead ambassadors monitor legislative bills, petition their respective states on specific requests (recognizing March as Bleeding Disorders Awareness Month is a recent example), participate in monthly calls, etc.
Phase 3 - Purpose and Mission. The mission of NEBDAC is ôto empower our community with tools, training, and resources to become an effective network that will champion bleeding disorder quality of life initiatives in the New England states - Connecticut, Maine, Massachusetts, New Hampshire, Rhode Island, and Vermont.ö Currently the coalition functions as a responsive action network not as an organization creating policy.
Become an ambassador of NEBDAC!
For more information, please email Joe Zamboni, NEBDAC Advocacy Coordinator at: JZamboni@nehemophilia.org.