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Sickle Cell Resources

This page contains links to all the information you need to know about sickle cell disease, whether you’re new to the community or are a lifelong warrior. Our partner agencies provide up-to-date research, statistics, educational materials, and stories about sickle cell disease (SCD). Feel free to scroll through all available resources or search by category.

SCD Education and Resources

2024 Sick Cells’ FAQ on Gene Therapies

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.

Public Comments Guide for Advisory Committee For Exa-Cel Gene Therapy For SCD

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. 

Care Center Model for SCD Toolkit

A toolkit to describe the Sickle Cell Disease Care Center Model

Dealing with Grief Toolkit

A toolkit designed to help you or a loved one manage grief

SCDCCA Fact Sheet_H.R. 1672_S. 904 03-2023

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.

FY24 Federal Requests

Meeting with your legislator? Don’t go empty-handed! Sick Cells, SCDAA, and SC3 have developed this legislative one-pager to help you advocate!

Health Insurance Basics & Advocating for Appropriate Coverage

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.

The Power of the Pen Toolkit

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.

State Legislation Toolkit

This toolkit will help you learn how to: advocate, write a bill, and work with legislators in your state.

How to Build a CHW Program Toolkit

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.

Pitching to the Media: The Warrior Way

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.

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