You are here

Home

SCID Toolkit

The multi-chapter SCID Toolkit provides parents with an overview of what to expect during diagnosis, treatment in the hospital, post-treatment, the return home, and the school-age years. Click here to download the toolkit in English.

The toolkit is also available in the following languages:

SCID Parent FAQ

This user-friendly publication provides parents with both a set of questions to ask their healthcare team and links to relevant SCID Compass pages for each stage of the SCID journey including diagnosis, pre-treatment, treatment, post-treatment and the new normal. Click here to download.

SCID Parent Fact Sheet

The SCID Parent Fact Sheet explains basic information about SCID, the importance of follow-up, and guidelines parents should adhere to before a final SCID diagnosis. Click here to download.

SCID: Early Treatment Saves Lives Flyer

This flyer was designed to be a quick overview of SCID types and treatments for families of newly diagnosed children. Click here to download.

IDF Guide To Hematopoietic Stem Cell Transplantation

This guide includes Hematopoietic Stem Cell Transplantation (HSCT) approaches that could potentially benefit patients with several types of primary immunodeficiency diseases (PI). Subsequent chapters provide more details as to how a patient is prepared for a transplant, what the transplant experience is like, and what life can be like after a transplant. Click here to download.

SCID Compass Info, FAQs and Facts

This flyer describes the SCID Compass program, offers answers to frequently asked questions about SCID, and provides a SCID Fact sheet for quick reference. Click here to download.

SCID: An Overview of Educational and Emotional Needs

Families of children with SCID have unique educational and emotional needs. Through colorful graphics and digestible nuggets of information, this research summary, based on parent surveys, shows stages that families will go through on their journey with SCID and outlines some basic topics they want to learn more about. Click here to see the research summary.

IDF Patient Handbook Chapter on SCID

The IDF Patient Handbook contains chapters on many primary immunodeficiencies including SCID. The SCID chapter features an overview of SCID, definitions of several SCID types, clinical presentations of SCID, how SCID is diagnosed, the role of inheritance in SCID, the importance of isolation, and SCID treatments. Click here to read the IDF Patient Handbook Chapter on SCID.

Understanding the Low T Cell Results from Your Baby's Newborn Screening

This publication describes what low T cell results mean in a newborn screening test, why it's important to follow-up with a specialist, what conditions can be seen in babies with no or low T cells, the possibility of a SCID diagnosis, and what to do to keep your baby from getting sick while waiting on a definitive diagnosis. Click here to download the Understanding the Low T Cell Results from Your Baby's Newborn Screening.

Newborn Screening for SCID and Conditions Associated with T Cell Lymphopenia

This publication explains what an abnormal newborn screening test means, defines SCID, discusses other immune system conditions that could cause an abnormal screening, and describes how SCID is treated. Click here to download Newborn Screening for SCID and Conditions Associated with T Cell Lymphopenia.

Live Rotavirus Vaccine

This brochure explains the purpose of the rotavirus vaccine and babies with SCID should not receive the vaccine. The rotavirus vaccines are live attenuated rotavirus strains and babies with SCID will experience severe gastroenteritis if given the vaccine. Click here to download the Live Rotavirus Vaccine brochure.

SCID and Family Planning

This information sheet is a resource to help you think through the different family planning options and special considerations after having a child with SCID. Click here to download Family Planning: Thinking About the Future.