THE VESSEL

Albany Days

March 18~March 20

March is advocacy month! The month of March sees multiple advocacy groups descend on our capital city and BDANENY is proud to be among those groups, bringing our message to legislators, staffers and regulators. This year, we were happy to gather in person again with advocates from across the state as our fellow New York State Bleeding Disorders Coalition members met for Albany Days 2023. Held at the Albany Hilton, one block away from the State Capital building, the two-day training continued the tradition of providing an annual opportunity for the bleeding disorders community from all parts of New York to become more educated in critical issues that affect access to quality care and to learn effective grassroots advocacy techniques. Prior to their legislative meetings, attendees received advocacy training to become more comfortable and proficient when speaking about public health issues. Throughout the event, families learned more about the legislative process and met other families navigating through the same health care issues.

R.E.A.D.Y. Program

The first part of our Albany Days was focused on the R.E.A.D.Y Program; the Regional Education Advocacy Development for Youth (READY) Teen Retreat is a free leadership program that teaches teens the ins and outs of advocacy and gives participants the opportunity to use these skills at the State level. Teens learned how to tell their story and how to utilize the advocacy skills they would find necessary when speaking to legislators at Albany Days. The retreat was filled with interactive games and sessions, including the creation of a laminated picture board showcasing the unique journey of each family.

Advocacy, Skills and Knowledge (ASK) Training

Sunday afternoon’s training focused on two key issues the coalition is highlighting for this current legislative session: step theray and prior authorization reform. Attendees learned about the background of these issues, why they are important to the bleeding disorders community, and the bill that we support which could provide for relief. The program also provided a blueprint for meetings with legislators, including how to frame your unique family experience to illustrate the need for remedial legislation. The program concluded with a dinner during which attendees were provided with updates on advocacy at the national level.

Legislative Visits

The final day of Albany Days saw advocates in the Legislative Office Building raising public awareness around bleed-