Now is the time to request funding for sickle cell! Join the movement #FundSickleCell

Learn More

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

Legislative One-Pager for FY 2021

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

The Importance of State-Level Advocacy

Sick Cells in collaboration with Advocate Velvet Brown-Watts has created a guide to help teach advocates how to take meaningful action at the state level. Click the button to download the step-by-step guide.

Build Your 5-Minute Sickle Cell Story

Sick Cells has created a guide to help teach advocates how to create their own 5-minute sickle cell story for use in approaching legislators and policy-makers. Click the button to download the step-by-step guide.

How to Meet With Your Legislator

Sick Cells has created a guide to help teach advocates how to reach out to their legislators. Click the button to download the step-by-step guide.

Sickle Cell Disease Fact Sheet

Sick Cells has compiled a list of facts about sickle cell. Click this link to read or download the fact sheet.

Priorities for Improving Access to Care

A quick list of our patient-centered priorities for improving access to care for people living with sickle cell disease.

Sick Cells’ Drug Utilization Review (DUR) Meeting Guide

A tool to assist patients and advocates when preparing oral or written comments for Medicaid DUR Board meetings.

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.

Stay in the Know

Sign up for our newsletter!