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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.

Severe combined immune deficiency (SCID) - IDF Reel Stories, Rafhaela and Jose Vedia

September 24, 2019

Update on SCID Compass

July 26, 2019
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Managing autoimmune issues with SCID

July 26, 2019
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Chapter 8: Classic Severe Combined Immunodeficiency

June 30, 2019
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Chapter 26: Newborn Screening

June 30, 2019
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Ground breaking gene therapy study results for X-linked SCID announced

April 19, 2019

Deteccíon de SCID en recién nacidos: A la vanguardia, explorando el futuro

April 05, 2019
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SCID Compass – An educational program of the Immune Deficiency Foundation

February 15, 2019
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A family affair: One family’s journey with severe combined immunodeficiency (SCID)

January 25, 2019
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Helping families take charge of adenosine deaminase (ADA)-severe combined immunodeficiency (SCID)

January 22, 2019

A family affair: One family’s journey with severe combined immunodeficiency (SCID)

January 04, 2019
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All 50 states now screening newborns for severe combined immunodeficiency (SCID)

December 11, 2018
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The history of SCID newborn screening

December 10, 2018

RAG1 severe combined immune deficiency (SCID) - IDF GROUNDBreaking Stories, Savannah

October 24, 2017

2017 testimony on SCID newborn screening in Arizona

March 20, 2017

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.