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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.

For Parents

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.

Ask IDF
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.

Peer Support
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.

IDF Friends
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.

Educational Programs
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:

Click here for a list of upcoming events.

Immunization Recommendations
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.

For Kids

Zebra Zone 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.

 

IDF Youth, Teen, and Young Adult programming is supported by:
CSL Behring, Grifols, Horizon Therapeutics, and Takeda