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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

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.

Local Advocacy Toolkit Part 2: Systemic Advocacy

This installment of Sick Cells’ Local Advocacy Toolkit is focused on creating systemic change. This means addressing issues within the hospital or hospital system that affect more than one person. To do this, you need to build a group of dedicated advocates who are willing to speak up for the needs and rights of the sickle cell disease community in their area.

Congressional Hearing Request Letter

Sick Cells has composed a community sign-on letter to various leaders in the House, Senate, Energy & Commerce Committee, and Ways & Means Committee to request an annual oversight hearing on the 2020 NASEM report on sickle cell disease. Sick Cells is grateful to the almost 40 partner organizations that signed on to this effort and are dedicated to amplifying the message and joining us in this request.

While all recipient names are included in this final version below, separate letters were addressed and distributed to the House, Senate, and Committees.

FY 2022 Appropriations, Senator Letter to Colleagues

Senators Cory Booker and Tim Scott continue to champion sickle cell disease by asking their colleagues to assist them in appropriating funding for sickle cell programs in fiscal year 2022.

Centers for Medicare & Medicaid Services (CMS) Sickle Cell Disease Report Card

In September of 2020, the Centers for Medicare & Medicaid Services (CMS) released an infographic summarizing their data on beneficiaries with Sickle Cell Disease.

2021 Letter to the Biden Administration From the Sickle Cell Community

Sick Cells has composed a letter to the Biden Administration with the help of the sickle cell community. This letter highlights the policy priorities that the Biden Administration can prioritize in order to improve the lives of the sickle cell community and all people living with sickle cell disease.

Sickle Cell Legislative One-Pager: FY 2022

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

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