NEBDAC grew out of a 2016 New England Leadership Summit held in Portsmouth, NH. Hosted by HAM and facilitated by the National Hemophilia Foundation (NHF) this inaugural event brought together current and future leaders of the New England (NE) region to form a collaborative partnership to develop larger, longer, transformative and sustainable projects and programs.
Many board members were in attendance from all three of the NE chapters - CHS, HAM, and NEHA. During that event, two collaborative activities were identified and given high level priority: (1) Regular meetings among the Executive Directors (EDs) of the three chapters, and (2) Form a collaborative advocacy coalition.
Soon after, NEHA hosted a stakeholder meeting on October 12, 2016 in Dedham, MA that brought 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 liaisons.
During this meeting, the Coalition formed. Each Executive Director from NEHA, HAM, and CHS appointed two state lead ambassadors to represent all six of the New England states. In addition, NHF, HFA, had two representatives from the Hemophilia Treatment Centers (HTCs) sit on this group. Lead ambassadors help to monitor legislative bills, petition their respective states to declare March as Bleeding Disorders Awareness Month, participate in monthly calls, etc. Through ongoing discussion among the Executive Directors, it was determined that NEHA (serving as fiscal sponsor and CHS and HAM provided letters of support) would apply for all advocacy grants.