Advocate for Change
Join us in fighting for better policies, increased funding, and greater awareness for sickle cell disease
Why Advocacy Matters
Every voice counts in the fight against sickle cell disease
300,000+
Babies born with sickle cell worldwide each year
$1.1 Billion
Annual healthcare costs for sickle cell in the US
54 Years
Average life expectancy with sickle cell disease
Under-funded
Research receives far less funding than comparable diseases
Current Campaigns
Active advocacy efforts you can join today
Sickle Cell Treatment Act
Support legislation to improve access to comprehensive sickle cell care and fund new treatment centers nationwide.
Newborn Screening Expansion
Advocate for universal newborn screening for sickle cell disease in all states and territories.
School Awareness Initiative
Push for mandatory sickle cell education in schools and better support for affected students.
How to Advocate
Multiple ways to make your voice heard
Contact Representatives
Email, call, or meet with your local, state, and federal representatives Living with Sickle Cell issues.
- Use our template letters
- Share personal stories
- Request meetings during recess
- Follow up regularly
Raise Public Awareness
Use social media, community events, and personal networks to educate others Living with Sickle Cell disease.
- Share educational content
- Use campaign hashtags
- Organize community talks
- Partner with local organizations
Vote & Engage
Vote for candidates who support sickle cell research and healthcare, and engage in the democratic process.
- Research candidate positions
- Attend town halls
- Participate in public forums
- Encourage others to vote
Build Coalitions
Work with other health organizations, patient groups, and community leaders to amplify our message.
- Join advocacy networks
- Attend coalition meetings
- Share resources and strategies
- Coordinate campaign efforts
Our Policy Priorities
Key areas where we need policy change
Healthcare Access
Ensure all sickle cell warriors have access to comprehensive, specialized care regardless of location or insurance status.
- Expand treatment center network
- Improve insurance coverage
- Reduce emergency room barriers
Research Funding
Increase federal funding for sickle cell research to match the disease burden and accelerate cure development.
- Double NIH research funding
- Support gene therapy trials
- Fund pain management research
Prevention & Early Detection
Implement comprehensive screening and prevention programs to reduce new cases and improve early intervention.
- Universal newborn screening
- Genetic counseling access
- Premarital screening programs
Health Disparities
Address racial and socioeconomic disparities in sickle cell care and outcomes through targeted interventions.
- Community health worker programs
- Cultural competency training
- Transportation assistance
Advocacy Victories
Real change achieved through collective action
Sickle Cell Disease Treatment Centers Act Passed
After 3 years of advocacy, Congress passed legislation establishing 10 new comprehensive care centers nationwide.
State Insurance Reform
Successfully advocated for legislation requiring insurance coverage of gene therapy treatments in 5 states.
NIH Funding Increase
Secured $50 million increase in federal sickle cell research funding through grassroots campaign efforts.
School Policy Victory
Achieved mandatory sickle cell education policies in 12 school districts across 3 states.
Ready to Take Action?
Your voice matters. Join thousands of advocates working to improve the lives of sickle cell warriors and their families.