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.
New England Hemophilia Association serves as the direct contact and manager of the NEBDAC Advocacy Coordinator.
Serve as point of contact for community and for their state. They are encouraged to recruit new volunteers in their local community. State Leads participate in monthly calls, and attend both BaCON and the Stakeholder Meeting.
Community members who opt-in agree to take action when an advocacy alert goes out, attend local events, and contact (via phone and email) their legislators ,etc.
NEBDAC Advocacy Coordinator
Leads the coalition in legislative and advocacy efforts in all six of the New England states. This position is a NEHA employee, but also works with the staff from the HAM and CHS.
State Leads + Ambassadors
Susi von Oettingen
Scheduled during the spring months, BaCon (or Bleeding disorders Advocacy CONvention) brings together the New England bleeding disorder advocacy community to learn about important issues facing each state, enhance advocacy skills, and prepare for the State Legislative Advocacy Days. BaCon is prepared and presented by NEBDAC.
State Advocacy Days
State legislative advocacy days is a wonderful experience and annual event held at the state capital of each New England state. While some are large multi-day events, some states advocacy days are a small affair. State legislative advocacy days provide training for community members, family, friends and volunteers on how to advocate for their community. It also presents an opportunity to meet senators & representatives and educate them, build relationships, and work with them on issues facing the bleeding disorders community. Elected officials can learn from those with bleeding disorders and their families how expensive treating bleeding disorders can be, how important it is to have access to comprehensive care, and the patient experience.