Resources on Sickle Cell Disease - Journey to ExSCellence

Resources

What is Sickle Cell?

Sickle cell disease is a genetic disorder that affects the shape and function of red blood cells. These cells can become rigid and sticky, leading to blockages and severe pain. Understanding sickle cell disease is crucial for managing symptoms and improving quality of life.

Sickle Cell Resources

Explore our collection of downloadable resources to learn more about sickle cell disease. These files include educational materials, guides, and information that can help patients and caregivers manage the condition more effectively.

Sickle Cell Legislative One-Pager FY2025

Meeting with your legislator? Don't go empty-handed! Sick Cells and SC3 have developed this legislative one-pager to help you advocate!

PATHS Sickle Cell Care Resource Guide

A guide to accessing top-tier sickle cell care and essential support services in Prince George’s County.

Care Center Model for SCD Toolkit

A comprehensive toolkit designed to explain the Sickle Cell Disease Care Center Model in detail.

Sickle Cell Disease Fact Sheet 2024

An updated fact sheet with essential information on sickle cell disease, including symptoms, treatments, and key statistics for 2024.

CDC Emergency Department SCD Fact Sheet

Tips for patients and caregivers on navigating the Emergency Department. This fact sheet will give you what you need to know, before you go.

External Resources and Links

Find additional information and support from these trusted organizations and websites.

Sickle Cell Disease Association of America (SCDAA)

The SCDAA offers support, education, and advocacy for those affected by sickle cell disease.

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American Society of
Hematology

ASH provides research, education, and patient support for blood disorders, including SCD.

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Centers for Disease Control and Prevention (CDC)

Access comprehensive CDC information on sickle cell disease, including data and patient resources.

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Sickle Cell Information for Healthcare Providers

Sickle cell disease (SCD) is a complex group of inherited blood disorders associated with debilitating pain..

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ASH Clinical Practice Guidelines on Sickle Cell Disease

In 2016, ASH initiated an effort to develop clinical practice guidelines on Sickle Cell Disease (SCD).

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Navigating sickle cell disease gene therapy

Gene therapy for sickle cell disease is available to you through FDA-approved therapies..

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Scientific Articles about Sickle Cell Disease

Click the link below to view a list of recent scientific articles generated from CDC programs and activities

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Cell and Gene Therapy (CGT) Access Model

The Cell and Gene Therapy (CGT) Access Model aims to improve the lives of people with Medicaid living..

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Study all About Clinical Research

Clinical research is medical research that studies people to understand health and disease. .

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Living with Sickle Cell Disease?

Living with sickle cell disease involves managing symptoms, accessing treatments, and finding emotional support. Here are some tips to help individuals and families manage the condition day-to-day.

Stay Hydrated: Drinking plenty of fluids can help prevent painful crises.
Manage Stress: High stress can trigger symptoms; use relaxation techniques.
Stay Active: Walking or swimming improves health; don’t overdo it.
Regular Checkups: Checkups help monitor health and catch complications.