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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.

Mental health & coping with a SCID diagnosis

July 06, 2022
Infant with mom

Premature infant surveillance & quality improvement study

July 06, 2022
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SCID in the Irish traveler community

July 06, 2022
Family dancing

Family planning considerations for SCID

July 06, 2022
Compass

SCID Summit: A parent's journey with ZAP70 deficiency

July 06, 2022
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Continuing education courses offered for physicians

July 01, 2022
IDF Podcast Graphic

Immunoglobulin replacement therapy: As individual as you with Dr. M. Elizabeth M. Younger

July 01, 2022
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Congenital athymia diagnosis begins at newborn screening

June 30, 2022
Taking notes while eating lunch

Lunch & Learn: Congenital athymia 101

June 29, 2022

Study finds CGD carriers exhibit symptoms of disorder

June 24, 2022
Person typing on a computer

Why laboratory-developed tests’ fate matters for rare disease patients

June 24, 2022
London

Donor spotlight: London

June 23, 2022
Medicare

Medicare and primary immunodeficiency

June 17, 2022

New encrypted email system to protect the exchange of information

June 15, 2022
pring 2022 Advocate Cover

Spring 2022 IDF ADVOCATE Newsletter

June 14, 2022

Cindy Kisik, adult with ADA-SCID, advocates for mental health awareness

June 13, 2022
Immunoglobulin

Immunoglobulin replacement therapy: As individual as you

June 09, 2022
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Lunch and Learn: Wiskott-Aldrich syndrome

June 03, 2022

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.

See all support groups

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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.