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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.

Man swabs his cheek for a genetic test.

Why genetic testing for primary immunodeficiencies may be useful

June 11, 2024
Print Material Fallback

NavigateAPDS and Path4Ward overview

February 28, 2024
Dr. Megan Cooper in her laboratory.

Discovery of new PI shows value of grants for exploratory research

December 08, 2023
Technician holds vial of blood while checking paperwork.

FDA must consider patient access in seeking test regulations

December 05, 2023
map with points marked on journey

SCID: Questions for your child's healthcare team

September 10, 2023
family with baby

Family planning: thinking about the future

September 10, 2023
chart/table with categories

SCID family journey

September 10, 2023
Person typing on a computer

Leniolisib approved for treating ultrarare APDS 1 and 2

March 28, 2023
Person typing on a computer

Why and how to collect a family medical history

March 16, 2023

SCID Compass video guides parents through family planning

February 24, 2023
Person typing on a computer

List of genetic variants that cause primary immunodeficiency expands

November 01, 2022
Animation doctor and patient

Family planning after SCID

October 05, 2022
Person typing on a computer

B cells slow to replenish after BMT for SCID

September 30, 2022

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

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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IDF coordinates support groups, events, and one-on-one connections, so you never need to feel alone.

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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.