Our Caregiver Resource page has information and resources to help and support caregivers in the SCD community. Check it out here:

Caregiver Resources

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

Proyecto de Alcance Hispano para Promover la Equidad (Proyecto HOPE): Reporte Final

On August 18th, 2021, Sick Cells hosted a multi-stakeholder roundtable discussion with individuals from the Hispanic community who live with SCD or care for loved ones with SCD. The goal of the roundtable was to understand SCD within the Hispanic community, identify key educational gaps, and create targeted educational tools to fill those gaps. This report is summary of our  findings.

Hispanic Outreach Promoting Equity (HOPE) Project Final Report

On August 18th, 2021, Sick Cells hosted a multi-stakeholder roundtable discussion with individuals from the Hispanic community who live with SCD or care for loved ones with SCD. The goal of the roundtable was to understand SCD within the Hispanic community, identify key educational gaps, and create targeted educational tools to fill those gaps. This report is summary of our  findings.

Sickle Cell Caregiver Help Desk Project Final Report

Sick Cells partnered with the Caregiver Action Network (CAN) to strengthen their Caregiver Help Desk to serve the sickle cell disease (SCD) community. This report explains our findings and outputs from this work.

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.

Coverage for SCD Summit 2021 Convening Proceedings Report

Sick Cells hosted a first-of-its-kind multi-stakeholder summit to discuss the changing landscape of healthcare coverage for sickle cell disease (SCD), called The Coverage for SCD Summit. This report contains proceedings and recommendations from this summit, which are intended to inform next steps to drive collaborative efforts and address gaps in access and coverage for SCD treatments.

Advancing Stakeholder Engagement with Medicaid

Since 2019, Sick Cells has worked to highlight the patient voice in coverage decision meetings by training advocates to share their story. To date, Sick Cells has trained over 25 individuals to advocate for sickle cell disease coverage in their state. This paper outlines the process Sick Cells follows to ensure the patient voice is reflected and prioritized in Medicaid coverage decisions across the country, and reviews current barriers and potential solutions to improve stakeholder engagement at these committee meetings.

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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