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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.

Project ECHO. Health worker with patient

Project ECHO clinician series: Steps to diagnosing a PI

April 10, 2023
Bold conversations podcast graphic

Bold conversations part 2: The roots of medical mistrust among communities of color

April 04, 2023

SCID research paper explores types of uncertainty faced by parents

March 31, 2023
Taylor Kane feeds her father John Kane, diagnosed with adrenoleukodystrophy (ALD), which affected his physical and cognitive functioning.

Remember The Girls empowers women affected by X-linked conditions

March 30, 2023
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Leniolisib approved for treating ultrarare APDS 1 and 2

March 28, 2023
Students in a classroom

PI education kit for schools

March 28, 2023
Project ECHO. Health worker with patient

Project ECHO clinician series: Signs and symptoms of PI

March 27, 2023
IDF video

Lunch & Learn: What is chimerism?

March 24, 2023
Healing the trauma of a life-changing PI diagnosis

Healing the trauma of a life-changing PI diagnosis

March 22, 2023
laptop

Prophylactic antibiotics and PI

March 21, 2023
Person typing on a computer

Why and how to collect a family medical history

March 16, 2023
Project ECHO. Health worker with patient

Project ECHO clinician series: Immune system basics

March 13, 2023
undiagnosed podcast graphic

Undiagnosed episode 1: "The caretaker"

March 06, 2023

Patient-informed continuing education course on PI wins award

March 02, 2023

SCID Compass video guides parents through family planning

February 24, 2023

IDF Clinician Finder lists providers who specialize in PI

February 17, 2023
Reading

Lunch & Learn: Chronic neutropenia 101

February 10, 2023

CVID diagnosis sheds light on a lifetime of infections

February 09, 2023

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.