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

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.

Advocacy in the ER Toolkit

Facing severe pain that requires immediate treatment is an unfortunate reality for many individuals with sickle cell disease (SCD). This toolkit includes resources and strategies to improve care for SCD warriors in the emergency room (ER).

Mentor Toolkit

This toolkit provides resources to assist mentees and mentors in making the most of the mentoring relationship.

Share Your SCD Story with Legislators (Worksheet)

Use this worksheet as a guide for preparing your story to share with legislators.

Sickle Cell Legislative One-Pager: FY 2023

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

Tips For Meeting With Your Legislators (Virtually)

This toolkit provides tips for virtual meetings with legislators.

CDC Steps to Better Health for People with Sickle Cell Disease Toolkit

The Centers for Disease Control and Prevention ( CDC) released the Steps to Better Health Toolkit to help individuals living with SCD manage their health. This collection of tools and resources provides evidence-based guidance on caring for common complications experienced by individuals living with SCD.

Achieving Health Equity: An Action Plan To Address Diversity Across Clinical Trials and Biomedical Research

Authors Yasmeen Long and Esther Krofah of FasterCures at The Miliken Institute have written an action plan to address diversity across clinical trials and biomedical research.

Nutrition Fundamentals

This guide helps sickle cell warriors bring intentionality to their diet & nutrition in order to help support the body in its  healing

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