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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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Orchard Therapeutics announces first patient dosed with cryopreserved formulation of OTL-103 gene therapy for the treatment of Wiskott-Aldrich syndrome

April 25, 2019
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Carefully consider participating in research

March 21, 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
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Study of lentiviral gene therapy for X-linked CGD underway

September 12, 2018
John I. Gallin, MD Chief Scientific Officer, Clinical Center, and Associate Director for Clinical Research, National Institutes of Health.

NIH recruiting for study that gets “to the heart” of being a CGD carrier

June 22, 2018
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Primary immune deficiency diseases in America: The fifth national survey of patients (2017)

March 19, 2018
Cover of the comparison report for the 2014, 2015, and 2016 insurance surveys.

Health insurance surveys fact sheets and report (2014, 2015, 2016)

November 18, 2016
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Health Insurance & Primary Immunodeficiency Diseases: A 2014 Immune Deficiency Foundation Survey

November 18, 2016
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X-Linked CGD carriers, long overlooked, are getting more attention

February 03, 2016
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Dr. Gennery’s fascinating talk at the CGD Symposium had patients riveted

December 03, 2015
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Single-center study shows reasonable outcomes for patients with CGD who receive medical therapy alone

November 10, 2015

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.