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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.

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SCID screening for premature infants

June 10, 2021
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SCID variants and the Irish family

June 10, 2021

Telehealth: Opportunities for Use with American Indian and Alaska Native SCID Families

June 10, 2021
Monoclonal antibodies in SCID treatment

Researchers study monoclonal antibodies in SCID treatment

May 31, 2021

Gene therapy research progresses

March 25, 2021
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Improving SCID newborn screening

November 12, 2020
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Frontiers in immunology publishes SCID Compass team research article

May 11, 2020
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Research summary: Educational and support needs for families living with SCID

May 06, 2020

SCID Compass reps share insight with staff at Children's Hospital of Orange County

April 08, 2020
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Overview of the NIH APECED natural history study

July 26, 2019
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Are carriers really unaffected? Observations in XHIGM carrier females

July 26, 2019
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Chapter 37: Clinical Trials

June 30, 2019
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2019 IDF research grant program recipients announced

May 07, 2019
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Treatment experiences and preferences among patients with primary immunodeficiency: National survey of patients (2018)

March 05, 2019
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Body temperature and fever in patients with primary immunodeficiency

January 15, 2019

La importancia de participar en las investigaciones: La experiencia de una Familia (The importance of participating in research: One family’s experience)

December 20, 2018
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Primary immune deficiency diseases in America: The fifth national survey of patients (2017)

March 19, 2018
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Health Insurance & Primary Immunodeficiency Diseases: A 2014 Immune Deficiency Foundation Survey

November 18, 2016

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

Get support

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.