We’ve created this advocacy toolkit with everything you need to contact your members of Congress to help protect the Sickle Cell Data and Collection program. This toolkit includes:
Sample messages and talking points
Background on what’s happening with HHS and the SCDC program in April 2025 and why it matters
Meeting with your legislator? Don’t go empty-handed! Sick Cells and SC3 have developed this legislative one-pager to help you advocate!
In light of the new FDA approvals for CASGEVYTM from Vertex Pharmaceuticals/CRISPR Therapeutics and LyfgeniaTM from bluebird bio, Sick Cells wants to provide up-to-date information for the SCD community.
This guide provides information on the upcoming U.S. Food and Drug Administration (FDA) convening for Cellular, Tissue, and Gene Therapies Advisory Committee to discuss exa-cel and how to submit written and oral comments.
A toolkit to describe the Sickle Cell Disease Care Center Model
A toolkit designed to help you or a loved one manage grief
The American Society of Hematology has created this Fact Sheet to provide information regarding the Sickle Cell Disease Comprehensive Care Act (H.R. 1672/S. 904). Advocates can use this document to request their legislators cosponsor the bill which was reintroduced in both the house and senate on March 21, 2023.
Meeting with your legislator? Don’t go empty-handed! Sick Cells, SCDAA, and SC3 have developed this legislative one-pager to help you advocate!
Managing insurance can be challenging. This toolkit is designed to help sickle cell disease (SCD) warriors and advocates know the basics about insurance coverage. This resource can help you understand options, keep costs lower, and appeal denials of coverage.
Letter writing to support sickle cell disease (SCD) can be applied in so many different ways for effective action and advocacy. This toolkit explains different types of letters and how they are used in various scenarios to help build confidence in your advocacy journey.
This toolkit will help you learn how to: advocate, write a bill, and work with legislators in your state.
