Sickle Cell Disease Resources
Educational Materials for Practitioners
Curative and Emerging Therapies for Sickle Cell Disease
https://open.chop.edu/courses/curative-and-emerging-therapies-for-sickle-cell-disease/
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.
For Caregivers
Be The Match
https://bethematch.org/patients-and-families/
Be The Match® provides patients and families with educational resources and support.
Be the Match Peer Connect Program
https://bethematch.org/patients-and-families/support-for-you-and-your-family/peer-connect-program/
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.
BMT Infonet Caring Connections Program
https://www.bmtinfonet.org/get-help/talk-survivor-or-family-caregiver
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.
Chapter 1: What are genes?
https://www.jasoncarterclinicaltrialsprogram.org/resources/treatments/genetherapy
This video will help you learn what gene therapy is and how it works.
Getting Ready for Your Child's Marrow or Cord Blood Transplant
http://dream.presentme.com/audio2011/20110518NMDPBunin/
This video will help you learn more about the transplant process here at CHOP.
Sickle Cell Transplant Advocacy & Research Alliance
https://curesicklenow.org/
STAR Consortium dedicated to To greatly increase awareness, accessibility & success of Bone Marrow Transplant (BMT) and Gene Therapy as cures for Sickle Cell Disease.
Transplant Process at CHOP
https://www.chop.edu/centers-programs/blood-and-marrow-transplant-program/transplant-process
Information on the transplant process at CHOP.
What Is a Blood or Marrow Transplant?
https://www.youtube.com/watch?v=wrfT5wqH8h0&feature=youtu.be
This educational video produced by Be The Match® explains the basics of a blood or marrow transplant.
For Children and Siblings
Be The Match: Support for Siblings
https://bethematch.org/templates/displaypagecontent/?id=9924
Be the Match has a special support section for sibling support.
KidsHealth.org
https://kidshealth.org/en/kids/sickle-cell.html?WT.ac=p-ra
KidsHealth.org offers information for kids and teens on a variety of health topics in an easy to understand way.
Super Sam vs the Marrow Monsters: Guide to BMT for Children Part 1
https://www.youtube.com/watch?v=8cKXUd95XTc&feature=youtu.be
This two-part animated film features Sam, a young boy making an epic movie production about his own transplant experience.
Support and Education Groups
Sickle Cell Support 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
Sickle Cell School Outreach
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.
Websites
Sickle Cell Disease Association of America - Philadelphia/Delaware Valley Chapter
http://sicklecelldisorder.com/
It provides case management, counseling, hospital/clinic/home visits, advocacy, career/vocational assistance, newborn screening follow-up and more.
The Sickle Cell Association of New Jersey
http://www.sicklecellnewjersey.org/
The Sickle Cell Association assists the sickle cell community, especially adults, with non–medical needs to help improve their quality of life.