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Resources for Parents of Children with Sickle Cell Disease #SickleHope

December 13, 2013 by Eric Coles

Resources for Parents of Children with Sickle Cell DiseaseThere are so many resources available for parents with children of Sickle Cell Disease that can lead to a better understanding of the disease and to parents connecting with appropriate, available resources.

Having a child with a chronic disease can cause parents to have feelings of hopelessness and confusion.  Especially since Sickle Cell Disease is a genetic trait, parents may feel responsible for their children's illness.  Support groups ensure that parents receive the emotional and mental assistance that they need and the knowledge that they are not alone.


The resource list is state by state and national.

State by State Resource Guide for Parent information and including Parent Support Groups from the CDC - National Resource Directory on Sickle Cell Disease 

From the Official Journal of the Academy of Pediatrics - Newborn Screening Fact Sheets 

North Carolina Department of Health Services - Sickle Cell Syndrome Program 

American Academy of Pediatrics - Sickle Cell Disease Resource Kit  

The Sickle Cell Clinical Program at The Children's Hospital of Philadelphia 

Sickle Cell Disease Association of America 

American Sickle Cell Anemia Association 

The Student Athlete with the Sickle Cell Trait 

Sickle Cell Kids 

The Child with Sickle Cell Disease - A Teaching Manual from the Texas Department of Health


National Heart, Blood, Lung Institute - What is Sickle Cell Anemia?  



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