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2026 SCD Policy Forum

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Details

Sick Cells is hosting the 2026 Sickle Cell Disease (SCD) Policy Forum, ‘Voices to Action’ on March 17-18, 2026.

“Voices to Action” is more than just a theme, it’s a call. The SCD Policy Forum brings together Warriors, caregivers, clinicians, and advocates to turn lived experience into legislative impact. From powerful stories to purposeful action, we elevate voices, shape policy priorities, and meet directly with lawmakers to drive meaningful change.

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

Day 1 (March 17) 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 elevator pitches

Day 2 (March 18) includes: 

  • An exciting Virtual Hill Day
  • Meetings with federal legislators and educating them on SCD issues and policy recommendations

Agenda

Policy Forum Agenda – Day 1

March 17, 2026
11:00 am – 11:05 am EST Welcome
Speaker: Ashley Valentine, Sick Cells
11:05 am – 11:15 am EST Keynote Address: Voices to Action
Speaker: Maia Laing, Sick Cells
11:15 am – 11:25 am EST Your Voice is the Work: How Patient Advocacy Drives Congressional Action
11:25 am – 11:45 am EST Ask #1: Participate in Sickle Cell Disease Congressional Education and Engagement
11:45 am – 12:05 pm EST Ask #2: Support and Advance the Sickle Cell Disease Comprehensive Act
12:05 pm – 12:25 pm EST Ask #3: Continued Funding for Sickle Cell Disease Programs
12:25 pm – 12:35 pm EST 10 Minute Wellness Break
Speaker: Ayoola Olubukola, Healing Through Artistic Mediums
12:35 pm – 1:55 pm EST Meeting Platform Walkthrough
Speaker: Lincoln Clapper, Advocacy Associates
2:00 pm – 2:30pm EST Hill Day Training: Key Terms, Resources and 1-pager walkthrough
Speaker: Ryann Hill, Indigo Hill StrategiesLegislator Meeting Demo
Melissa Akinlawon, Sick Cells
2:30 pm – 2:40pm EST Closing Remarks
Speaker: Ashley Valentine, Sick Cells
2:40 pm – onward EST Breakout Room Sessions: Advocates meet their state teams & prepare for Day 2
Facilitated by Sick Cells Staff
Hill Day – Day 2

March 18, 2026
Check schedule in Advocacy Associates portal or app (Hill day participants only)

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Sponsors

Thank you to the sponsors of the 2026 SCD Policy Forum.

Previous Successes

Read about the successes from our previous years: