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Whether you are someone living with PI, a caregiver, or a healthcare professional, you’ll find articles, videos, podcasts, and more to help deepen your understanding of PI.

Study finds CGD carriers exhibit symptoms of disorder

June 24, 2022
Person typing on a computer

Why laboratory-developed tests’ fate matters for rare disease patients

June 24, 2022

SCID carrier discussion explores family planning, mental health

May 05, 2022
Person typing on a computer

Families help shape SCID Compass Family Planning Guide

April 28, 2022
Mother and son

SCID Compass: A carrier's perspective

April 08, 2022
Reading

Understanding immunological testing: An IDF Forum

February 17, 2022
IDF Podcast Graphic

Addressing payer challenges & ensuring access to genetic testing

October 28, 2021
Rare of the Rare

Rare of the Rare examines SCID treatment long-term

September 28, 2021

Genetic testing helpful in PI diagnosis

September 24, 2021
genetic testing

Genetic Testing for Inborn Errors of Immunity (PI): An IDF Forum, September 9, 2021

September 09, 2021
Mother and son

Thinking about the future: Navigating family planning with SCID

June 10, 2021

Genetic counseling and SCID

March 19, 2021

Genetic counseling part of the SCID Compass series

February 23, 2021
Genetics & PI

Genetics and the immune system

January 20, 2021
Genetics

Overview of genetics & PI: An IDF Forum, November 24, 2020

November 24, 2020
laptop

What is a carrier? What does it mean to be a carrier?

November 20, 2020
IDF video

Are carriers really unaffected? Observations in XHIGM carrier females

July 26, 2019
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Chapter 24: Inheritance

June 30, 2019

What is PI?

Learn the signs and symptoms of PI and when it might be time to ask your doctor about it.

Learn about PI

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Ask IDF

Getting answers can help create peace of mind. Ask us anything and we'll consult with experts.

Specialists can be located online through the IDF Clinician Finder. (Please note, if no results populate, increase the distance from your address. You can also search by your state).

Please note the following important information about the list of specialists:

  • These clinicians have voluntarily reported to IDF that they diagnose, treat, and manage patients with primary immunodeficiency (PI). Please know that IDF does not verify these reports.
  • This is not a referral. IDF does not recommend one clinician or medical facility over another or refer patients to a particular provider.
  • It is your responsibility or that of your legal guardian to evaluate, select and engage a clinician or facility, given your insurance coverage and other circumstances, to help you manage your PI. 
    There might be other clinicians at each facility that also treat PI.

Questions to ask while evaluating a clinician or facility:

  • Do you accept my insurance?
  • Do you diagnose and treat patients with primary immunodeficiency diseases? (If already diagnosed, name the PI.)
  • How many patients with primary immunodeficiencies are treated at your facility?

For those receiving Ig replacement therapy:

  • Do you prescribe IVIG and SCIG?
  • Do you prescribe more than one brand of immunoglobulin?
  • Do you offer patients receiving IVIG the option of receiving their infusion in a medical or home setting?

Some patients also find physicians through our Get Connected Groups or IDF Friends. 

Our virtual education programs are recorded and uploaded to our website resource library and YouTube page. You can view our webinars only via our YouTube webinars playlist.