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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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Paper explores implementation of newborn screening for SCID and other conditions

May 05, 2023

Monitoring chimerism after transplant is critical to good health

April 21, 2023

SCID research paper explores types of uncertainty faced by parents

March 31, 2023
IDF video

Lunch & Learn: What is chimerism?

March 24, 2023

SCID Compass video guides parents through family planning

February 24, 2023

Study shows gene therapy is effective for Artemis-SCID

February 01, 2023
Doctor following up with patient

Lunch & Learn: The importance of long-term follow-up

December 19, 2022

SCID bone marrow transplant can result in chronic long-term health effects

December 15, 2022
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Organ function and long-term outcomes following hemopoietic stem cell transplants for SCID

November 30, 2022

SCID uncertainty paper examines how parents cope

November 16, 2022
IDF Podcast Graphic

A SCID Compass retrospective

October 31, 2022

Gene therapy for ADA-SCID shows promise

October 13, 2022
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SCID Compass Lunch and Learn: An ADA-SCID gene therapy update

October 06, 2022
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Family planning after SCID

October 05, 2022
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B cells slow to replenish after BMT for SCID

September 30, 2022
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B-cell reconstitution and IgG infusion for SCID

September 06, 2022

UCLA researcher to update status of ADA-SCID gene therapy trials

August 30, 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.

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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.