Policy Forum

Details

Sick Cells and the Sickle Cell Community Consortium present the 2025 Sickle Cell Disease (SCD) Policy Forum: March 11-12, 2025.

The SCD Policy Forum is a 2-day, hands-on event designed to inform sickle cell advocates on critical 2025 SCD policy priorities, train advocates on how to speak with their federal representatives and share what matters to the community, and match advocates with their federal representatives in a live Virtual Hill Day session.

Day 1 (March 11) includes:

Up-to-date education on this year’s sickle cell disease federal priorities
Expert speakers on important policy topics
Workshops and team breakout sessions to practice your elevator pitch

Day 2 (March 12) includes:

An exciting Virtual Hill Day
You meeting with your federal legislators and educating them on SCD issues and policy recommendations

Agenda

11:00 am ET	Kick-Off & CBO Welcome Ashley Valentine and Dr Lakiea Bailey
11:05 am ET	Keynote Address: Your Voice Belongs James Griffin
11:15am ET	HRSA Reauthorization and Importance of Community Advocacy Rep. John James
11:25 am ET	Legislation to Support and Pass (Panel) Ask #1: Support and Pass SCD Legislation: Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act of 2025 (119th Congress, S.735) Support and Pass SCD Legislation: *Sickle Cell Disease Comprehensive Care Act* (119th Congress, S.721) Megan McCully (Sen. Tim Scott’s Office), Nadia Laniyan (Sen. Cory Booker’s Office); Moderated by Ryann Hill
11:55 pm ET	FY26 Appropriations: Funding for Vital Programs (Panel) Ask #2: Appropriate $25 Million for the CDC Sickle Disease Data Collection Program Ask #3 Appropriate $15 Million for Programs under the HRSA Sickle Cell Disease Treatment Act Appropriate $8.205 million to the Sickle Cell Disease Treatment Demonstration Program (SCDTDP) Appropriate $7 Million to The Sickle Cell Disease Newborn Screening Follow-up Program (FP) through the Special Project of Regional And National Districts. Sarah Reeves, Wally Smith, Dr. Carolyn Rowley; Moderated by Dr. Kim Smith-Whitley
12:30 pm ET	Wellness Break Ayoola Olubukola
12:40 pm ET	Hill Day Meeting Platform Walkthrough
1:00 pm ET	Hill Day Training: Key Terms, Resources, 1-Pager Walkthrough and Meeting Demos Ryann Hill, Timour Razek, Arielle Krahenbuhl, Kierra Coffer, Tasha Lee
1:30 pm ET	Breakout Room Sessions Advocates will meet with their state teams, practice meetings and prepare for Day 2Kelly Hawthorne
2:25 pm ET	Closing Remarks Ashley Valentine