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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

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

SCD + COVID-19 Community Flyer

This flyer helps provides some of the key information about COVID-19 Vaccination for members of the SCD Community.

Wellness Fundamentals

Developed by Dr. Marjorie Dejoie-Brewer,  this explanation of the Wellness Fundamentals shows a patient-centered approach to better health.

How to Do “Data-Driven” Advocacy

A toolkit to help sickle cell advocates leverage data to drive their advocacy work.

Local Advocacy Toolkit Part 1: Individual Advocacy

This toolkit offers tips on how individual warriors and caregivers can advocate for themselves and their loved ones during an emergency department (ED) visit or hospital admission.

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