Whether you’re a patient, a caregiver, a friend, a family member or a provider, sickle cell advocacy is important as we work toward a universal cure. Please visit the links below to find resources to help you advocate for key legislative issues that are important to individuals living with SCD and their families.
2025 Advocacy Days Fact Sheets
Download “What is Sickle Cell Disease” | Download “Protect Federal Sickle Cell Disease (SCD) Programs”
Download “Reject Cuts to Medicaid”
- SCDAA’s October 2024 Legislative Update
- SCDAA’s June 2024 Legislative Update
- SCDAA’s March 2024 Legislative Update
- SCDAA’s FY 2023 Federal Legislative Priorities: SCDAA advocacy priorities for FY 2023
- SCDAA’s comments on the CDC’s opioid guidelines: Urging the CDC to go further to support the sickle cell community’s needs for pain management
- Neurobiological Mechanisms of Pain in Sickle Cell Disease: A National Institutes of Health article on the physiology of pain resulting from SCD
- Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action: A Report by the National Academies of Sciences, Engineering and Medicine
- Evidence-Based Management of Sickle Cell Disease: A Report by the National Heart, Lung, and Blood Institute at the National Institutes of Health
- Letter to Congress from the SCD community: Urging leadership to mandate an annual hearing on the 2020 NASEM report on SCD.