Skip to main content
IDF logo

Browse resources

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.

Thumbnail for webinar reading "Decoding PI: Whole genome sequencing and the future of newborn screening".

Whole genome sequencing and the future of newborn screening

April 20, 2026
Researcher studying DNA

Study uses genomic screening to look for PI in newborns

February 27, 2025
SCID Accomplishments Pic

SCID Compass recognized for supporting families through newborn screening

October 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
Print Material Fallback

SCID: What healthcare providers need to know

September 10, 2023
chart/table with categories

SCID family journey

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
Project ECHO. Health worker with patient

Project ECHO clinician series: Newborn screening for SCID

May 22, 2023
Infant with mom

Premature infant surveillance & quality improvement study

July 06, 2022
Person typing on a computer

Congenital athymia diagnosis begins at newborn screening

June 30, 2022
Person typing on a computer

Families help shape SCID Compass Family Planning Guide

April 28, 2022
Person typing on a computer

SCID newborn screening brings molecular shift to North Carolina

April 12, 2022
baby

SCID Compass Lunch & Learn: February 9, 2022

February 11, 2022
SCID mandated in PA newborn screenings

SCID mandated in PA newborn screenings

September 30, 2021
baby

SCID screening for premature infants

June 10, 2021
laptop

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.

See all support groups

lady looking at computer

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.