When your child is diagnosed with a primary immunodeficiency (PI), you probably have many questions, ranging from “How can I help them understand?” to “What can I do to manage their health?” IDF is here to help you and your child.
Infants and Children Living with PI
Read helpful advice for parents of children with PI, including helping your children understand their disease, normalizing their life and coordinating their healthcare. This information is taken from the IDF Patient & Family Handbook.
Your Child’s School
Working with your child’s school will likely be an important part of their care. Click here for how to prepare for a meeting with your child’s school. You can also download the IDF School Guide, which contains key medical points about PI and associated special needs and legal rights. Click here to download the IDF School Guide.
Parents often have many questions about caring for their child with PI, from locating a specialist to understanding insurance coverage. When you have a question, we encourage you to submit our Ask IDF form or call 800-296-4433.
IDF’s Peer Support Program connects people and patients who share similar relationships to PI. Parents of children with PI can be connected to other parents. Click here for more information.
Visit IDF Friends, a discussion forum designed for those living with PI, including parents, where you can connect with others parenting a child with PI. Click here to visit the discussion forum dedicated to parents.
In addition to educational materials and information, we offer patient education programs to help patients and families manage PI. We feature programs for families at each of these events:
In April 2014, the IDF Medical Advisory Committee responded to the uncertainty regarding which live viral or bacterial vaccines can be given to patients with primary immunodeficiency diseases as well as the growing neglect of societal adherence to routine immunizations. “Recommendations for live viral and bacterial vaccines in immunodeficient patients and their close contacts” appeared in the April 2014 edition of The Journal of Allergy and Clinical Immunology. Click here to view the article.
IPOPI Informational Booklet “Vaccines and primary immunodeficiencies” – This booklet, published by the International Patient Organisation for Primary Immunodeficiencies, provides general guidance on vaccinations that should be considered by patients with primary immunodeficiency diseases (PI). This is part of a series of IPOPI patient information leaflets comprising helpful information and guidance for patients, their families and other interested stakeholders of the PI community. Click here to download the booklet.
IDF Kids Connection
The IDF Kids Connection is a hub which provides links to all the programs, games and resources available to children with PI as well as their parents and families.
IDF games are designed for children ages 4 to 12 and are a great way to have fun, while learning about the immune system. Although the IDF Arcade was created for small children, it can be enjoyed by people of all ages!
A special place for kids to learn why IDF says, THINK ZEBRA! Kids can show their stripes and download a zebra coloring page.
Our Immune System
This storybook educates children about primary immunodeficiency diseases through delightful, eye-catching illustrations. The characters explain how the immune system works and describe the treatments for pediatric patients.
Severe Combined Immune Deficiency (SCID) is a type of PI found in infants that leads to life-threatening infections unless the immune system can be restored through a bone marrow transplant, enzyme replacement or gene therapy. Early identification can make possible life-saving intervention before infections occur. All types of PI, not just SCID, stand to benefit from early diagnosis as research advances. Click here for more information about newborn screening.
IDF SCID Newborn Screening Campaign
Currently, many states have added SCID to their newborn screening panel, and our goal is to have all states add SCID. You can learn more about the IDF SCID Newborn Screening Campaign and become a successful advocate. Click here for more information.
IDF SCID Initiative
The IDF SCID Initiative, comprised of community members with specialized interest and knowledge specific of SCID, is dedicated to education, awareness, and diagnosis the disease. Click here for more information.