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.
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.
This toolkit can help community and clinical leaders implement successful and sustainable community health worker (CHW) programs. This CHW toolkit will cover what CHW programs are and what is suggested to start a program on your own as well as the benefits to your organization and your SCD community.
Sharing your story with the media is becoming a common opportunity for many SCD Warriors. However, you want to be prepared and ready to adapt. This toolkit will help you think through the best way to break your story.