Albany Days 2026: Our Community, Our Voice!

This article was originally published in our Summer 2026 Bleeding Times Magazine. See the entire magazine by clicking here.

Author: Jessica Graham, NY State Bleeding Disorders Coalition Coordinator

What an incredible and successful Albany Days we had in March! Advocates from every corner of the state gathered to connect, learn, and speak up for the bleeding disorders community and the wider rare disease community. Our weekend together was packed with tools and trainings to prepare everyone for their legislative meetings on Monday.

• READI Program (Regional Education & Advocacy Development Initiative): This Saturday-to-Sunday session was perfect for families and adults new to advocacy. Attendees learned the basics of the NYS Legislature and how to advocate effectively, including time for hands-on practice and refining their skills.
• ASK Program (Advocacy, Skills, & Knowledge): On Sunday, READI attendees were joined by veteran advocates, including chapter and HTC leaders. Everyone sharpened their advocacy skills in our “legislative meeting match-up” (kind of like speed dating for advocacy) to get ready for legislative meetings on Monday!

Our 2026 Legislative Asks:

• Access to Specialists: We advocated for Bill S.965/A.2384A, sponsored by Assemblyman Eichenstein (Senator sponsor TBD), which seeks to allow parents of children with rare, fragile, and deteriorating conditions to access out-of-network specialists when needed.
• Prior Authorization Reform: Governor Hochul included prior authorization reform in the FY 2026–27 state budget. We advocated for legislators to keep these crucial changes in the final budget. Implementing these reforms will help reduce frustrating treatment delays and administrative burdens.

Advocacy Day: Making a Real Impact

Monday was the big day! As part of Bleeding Disorders Awareness Month efforts, our dedicated advocates passionately represented individuals living with bleeding disorders and rare diseases at the NYS Capitol. Attendees took turns staffing our awareness display table, greeting passersby and handing out information to educate the public and Capitol staff about bleeding disorders. Thank you to Senator Addabbo and Assemblymember Conrad for their continued partnership in sponsoring March as Bleeding Disorders Awareness Month!

Throughout the day, our team of advocates made their voices heard in an amazing 52 legislative offices! Their hard work paid off in impressive ways, helping secure additional co-sponsors for both bills, significantly raising awareness, and building crucial connections with legislators and their staff.

Thank you to every person who attended for their dedication and effort this year, including a special shout-out to our social media guru from NYCHC, Brandon Greene! We also thank Max Feinstein for joining the program to capture community stories and perspectives from our advocates for the Our Voices Have Power initiative!