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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

Proclamation on National Sickle Cell Disease Awareness Month, 2020

On August 31, 2020, in honor of Sickle Cell Awareness Month, the President made a proclamation. Click the link to read the full statement.

Human-Centered Design Report by health+

Executive summary of the Human-Centered Design Report by health+ and the Office of Minority Health. Read the report here.

Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action

The Department of Health and Human Services (HHS), Office of Minority Health requests that the National Academies of Sciences, Engineering, and Medicine convene an ad hoc committee to develop a strategic plan and blueprint for addressing sickle cell disease (SCD) in the United States. Use this link to read the full report and blueprint they created.

Roundtable on Leveraging Data to Address Sickle Cell Disease Key Takeaway Report

The nonprofit Center for Open Data Enterprise (CODE) and the U.S. Department of Health and Human Services (HHS) Office of the Chief
Technology Officer (CTO) co-hosted a roundtable, in partnership with the HHS Office of the Assistant Secretary of Health (OASH). Click the link to read the Key Takeaway Report.

SCD Resource Library

Research, stories, and fact sheets from Sickle Cell Disease Coalition for current patients, caregivers, and medical professionals.

Community-based Organizations

Information from our partners at SCDAA listing ways to get involved with the sickle cell community through local orgs, events, and SCDAA chapters.

SCD Pathophysiology

Hub for educational resources on SCD including fact sheets, workbooks, pamphlets and brochures.

Evidence-based Clinical Practice Guidelines

These evidence-based guidelines of the American Society of Hematology are intended to support the SCD community in decisions about prevention, diagnosis, and treatment of SCD.

Clinical Trial Specialist Support

This free program offers families one-on-one support from a clinical trials specialist and resources to learn more about SCD clinical trials.

Clinical Trials

Government-created search engine to help you find current medical trials for SCD. Search by country, recruiting status, condition, or specific term.

SCD and Transplant Resources

Be The Match offers many free programs and resources to support patients, caregivers and families before, during and after blood or marrow transplant.

Complications & Treatment Information

Government resource outlining symptoms of SCD and their treatments. Disponible en Español.

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