Sick Cells and Avalere Health want to thank our Dialogue attendees for sharing so many interesting ideas which helped us create a Roadmap on how to advance care for individuals with SCD.

Read the Roadmap

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

FY22 Congressional Hearing Request Letter

This letter to Congress is requesting annual congressional hearings on the NASEM Report released 2020. It’s more important than ever to keep the momentum going.

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!

Advancing Care for Sickle Cell Disease: A Strategic Roadmap

Sick Cells and Avalere Health partnered to host a multi-stakeholder dialogue to discuss and identify barriers to accessing quality care. Through this dialogue, we have developed a strategic roadmap to advance the care and lives of people living with sickle cell.

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.

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