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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.

IDF video

Parents of children with SCID, CID, and complex PI: 2024 PI Conference

August 05, 2024
IDF video

Severe combined immunodeficiency (SCID) overview: 2024 PI Conference

August 05, 2024
IDF Podcast Graphic

ADA-SCID Gene Therapy Update with Dr. Donald Kohn

December 11, 2023
IDF video

Lunch and Learn: ADA-SCID Gene Therapy Update

October 26, 2023
SCID Accomplishments Pic

SCID Compass recognized for supporting families through newborn screening

October 13, 2023
Carol Ann Demaret holds her son David Vetter in July 1977.

Carol Ann Demaret advocated for SCID—and IDF

September 20, 2023
IDF video

Lunch and learn: Breastfeeding and CMV

September 19, 2023
Person typing on a computer

Volunteer spotlight: Rafhaela (Ella) Vedia

September 13, 2023
map with points marked on journey

SCID: Questions for your child's healthcare team

September 10, 2023
Print Material Fallback

SCID newborn screening results fact sheet

September 10, 2023
family with baby

Family planning: thinking about the future

September 10, 2023
Print Material Fallback

SCID: What healthcare providers need to know

September 10, 2023
chart/table with categories

SCID family journey

September 10, 2023
alternating boxes with text and images

SCID telehealth for American Indians and Alaska Natives

September 10, 2023
IDF video

Lunch and Learn: APHL Update

August 31, 2023
Closeup of a newborn's tiny feet and toes.

Study shows newborn screening improved SCID survival rates

July 13, 2023
IDF Podcast Graphic

Transitioning from pediatric to adult care with Dr. Lauren Sanchez

June 05, 2023
Project ECHO. Health worker with patient

Project ECHO clinician series: Newborn screening for SCID

May 22, 2023

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.