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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.

Baby

Mom shares SCID isolation story

October 06, 2021
SCID mandated in PA newborn screenings

SCID mandated in PA newborn screenings

September 30, 2021
IDF Podcast Graphic

How one family navigates isolation for SCID during COVID

September 30, 2021
Rare of the Rare

Rare of the Rare examines SCID treatment long-term

September 28, 2021

Back-to-school Q&A focuses on SCID

September 17, 2021
L&L HSCT During Pandemic

Pandemic doesn't delay SCID treatments

August 31, 2021
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SCID Compass Lunch & Learn: August 25, 2021

August 25, 2021

USA Today spotlights family affected by SCID

July 14, 2021
Person typing on a computer

Expectations and experiences: Parent and patient perspectives

July 08, 2021
Supporting infants

Support your infant in the hospital

June 25, 2021
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SCID Compass Lunch & Learn: June 4, 2021

June 11, 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
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Introducción a IDF, SCID y SCID Compás

June 10, 2021
baby

SCID screening for premature infants

June 10, 2021

A parent's journey with SCID

June 10, 2021
Mother and son

Thinking about the future: Navigating family planning with SCID

June 10, 2021
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10+ years of SCID Screening in New York: Evolution of primary and secondary molecular screening

June 10, 2021

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.