Sickle Cell Disease Resources
Educational Materials for Practitioners
In this lecture, we provide an overview for general practitioners and hematologists in which we review limitations of current therapies for sickle cell disease, pivotal data leading to the emergence of novel therapies, and approaches to deciding which therapies are optimal for individual patients.
Be The Match® provides patients and families with educational resources and support.
The Peer mentors are trained volunteers who have either undergone transplant or are caregivers for someone who has undergone transplant.
In order to be matched, you fill out the online form that you can get to from the link above and answer questions about what you are looking for in a peer connection, your child’s diagnosis, where you are in the transplant process.
Mentors are volunteers who have either undergone transplant or are caregivers for someone who has undergone transplant.
Their mentors who are caregivers for pediatric patients are limited.
To connect, complete an online form at the bottom of the page linked above with demographic information about yourself and the patient.
This video will help you learn what gene therapy is and how it works.
This video will help you learn more about the transplant process here at CHOP.
STAR Consortium dedicated to To greatly increase awareness, accessibility & success of Bone Marrow Transplant (BMT) and Gene Therapy as cures for Sickle Cell Disease.
Information on the transplant process at CHOP.
This educational video produced by Be The Match® explains the basics of a blood or marrow transplant.
For Children and Siblings
Be the Match has a special support section for sibling support.
KidsHealth.org offers information for kids and teens on a variety of health topics in an easy to understand way.
This two-part animated film features Sam, a young boy making an epic movie production about his own transplant experience.
Support and Education Groups
The Children's Hospital of Philadelphia offers support groups for parents and teens facing the challenges of life with sickle cell disease.
Tools for Success at School
The Sickle Cell Center at CHOP offers comprehensive information for educators on sickle cell disease and how it can affect the school life of children.
It provides case management, counseling, hospital/clinic/home visits, advocacy, career/vocational assistance, newborn screening follow-up and more.
The Sickle Cell Association assists the sickle cell community, especially adults, with non–medical needs to help improve their quality of life.