Speaking up for health equity in sickle cell care
We advocate for policy change, health equity, and stronger systems of care — working to close the gaps in treatment, funding, and awareness for communities affected by sickle cell disease.
Advocacy Initiative A Voice for the SCD Community
Sickle cell disease is one of the most common inherited blood disorders — yet it remains one of the most underfunded and misunderstood. We're working to change that.
Our advocacy pillars
We push for change at every level — from the exam room to the statehouse — so people living with sickle cell disease get the care and dignity they deserve.
Policy & Legislation
Advocating for stronger public policy, research funding, and legislation that improves access to sickle cell care.
Health Equity
Working to close disparities in diagnosis, treatment, and quality of care for underrepresented communities.
Community Voice
Amplifying the lived experience of patients and families so their stories help shape decisions that affect them.
Awareness alone isn't enough — we need change that lasts
Despite being one of the most common genetic blood disorders in the United States, sickle cell disease remains drastically underfunded and often misunderstood. ENJAH-SCF's advocacy work pushes beyond awareness toward real, systemic change in how the SCD community is treated, funded, and heard.
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Rooted in lived experience
Our advocacy is guided by the voices of patients, families, and the legacy of Lizzy & Jackie Holmes.
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Built on partnership
We work alongside healthcare providers, researchers, and community organizations to move policy forward.
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Focused on lasting impact
From local outreach to policy conversations, every effort aims at change that outlives a single campaign.
Ways to get involved
Advocacy works because people show up. Here's how you can add your voice.
- Share your story or your family's experience with sickle cell disease
- Join community awareness events and outreach efforts
- Contact local representatives about sickle cell policy priorities
- Partner with ENJAH-SCF as a healthcare provider, school, or organization
- Volunteer your time, skills, or professional expertise
How to take action
Four simple ways to add your voice to the movement.
Learn the Issues
Understand the gaps in sickle cell care, funding, and policy that ENJAH-SCF is working to close.
Share Your Voice
Tell your story, follow our updates, and help spread awareness in your community.
Reach Out
Contact local leaders and representatives to support sickle cell-related policy priorities.
Stay Engaged
Join future campaigns, events, and partnership opportunities as our advocacy work grows.
Ways to support our advocacy work
Every voice adds weight to the push for better sickle cell care and policy.
Partner With Us- Share your sickle cell story
- Contact your representatives
- Attend an awareness event
- Volunteer with our team
- Become a community partner
- Sign up for advocacy updates
Sharing my story at a local awareness event was the first time I felt like sickle cell disease wasn't invisible. Advocacy gave our family a voice.