As a partner with Heartland Sickle Cell Disease network, you will receive a link to the Partner site via email. You may then complete your partner profile and access information and data. Only Heartland Sickle Cell Disease Network partners and providers may access this part of the website. For information, contact Regina Abel.
Treating sickle cell disease: Is hydroxyurea right for your child? -- English, Spanish, French
Treating sickle cell disease: If hydoxyurea right for you? -- English, Spanish, French
We have developed educational booklets for families, health care providers, and educators. Here is the web link to each:
ASH SCD Pocket Guides for Clinicians
Refer to this document for information on help with Transportation, Housing, and Meals
St. Louis Resource Guide for Patients
Sickle Cell Association: http://sicklecellassociation.org/
Youth and Family Center: http://www.theyfc.org/
Center for Disease Control and Prevention
Sickle Cell Disease Association of America (SCDAA)
Sickle Cell Information Center
American Sickle Cell Anemia Association (ASCAA)
The ASCAA is located in Cleveland, Ohio but provides educational information out of state and information on some services in other states.
The Mayo Clinic
The American Society of Hematology
National Institute for Children's Health Quality
Parent's Guide to Sickle Cell and School – Children's Mercy Kansas City
Educator's Guide to Sickle Cell Disease – St. Jude Children's Hospital
Management of Acute Complications of Sickle Cell Disease
Health Maintenance and Management of Chronic Complications of Sickle Cell Disease
Hydroxyurea and Transfusion Therapy for Treatment of Sickle Cell Disease
Video: What is Sickle Cell Anemia? – American Society of Hematology
Video: Sickle Cell Disease: A Patient's Journey – American Society of Hematology
Video: Living With and Managing Sickle Cell Disease – National Heart, Lung and Blood Institute
Video: Camp Crescent SCD Summer Camp – St. Louis Children's Hospital
Video: Center Provides Care and Compassion for People with SCD – Truman Medical Center
From the Centers for Disease Control
Fact Sheet: Get Screened to Know Your Sickle Cell Status
Learn why and how to get screened for sickle cell trait.
Fact Sheet: Sickle Cell Disease
What you should know about sickle cell disease.
Fact Sheet: Sickle Cell Disease and College
Nine steps to living well with sickle cell disease in college.
Fact Sheet: Sickle Cell and Pregnancy
What you should know about sickle cell disease and pregnancy.
Fact Sheet: Sickle Cell Trait
What you should know about sickle cell trait.
Infographic: Get Screened for Sickle Cell Trait
Did you know there’s more than one way to inherit sickle cell trait? Learn how it is inherited.
Tip Sheet: Supporting Students with Sickle Cell Disease
Toolkit for Living Well with Sickle Cell Disease
Living Well With Sickle Cell Disease
People with sickle cell disease can live full lives and enjoy most of the activities that other people do. The following tips will help you, or
someone you know with sickle cell disease, stay as healthy as possible.
Five Tips to Help Prevent Infection
Common illnesses, like the flu, can quickly become dangerous for a person with sickle cell disease. The best defense is to take simple
steps to help prevent infections.
Emergency Guide: When to See the Doctor
It is very important that every person or family with a young child with sickle cell disease have a plan for how to get help immediately, at
any hour, if there’s a problem. Be sure to find a place that will have access to your medical records or bring a copy.
Sickle Cell Disease National Resource Directory
The Sickle Cell Disease National Resource Directory is a compilation of national agencies, state-based health providers, and community-
based organizations that provide services and resources for individuals and families affected by SCD.
Washington University School of Medicine
in St. Louis
Campus Box 8505
4444 Forest Park Ave.
St. Louis, MO, 63108-2212