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.

Person typing on a computer

Addressing caregivers’ mental health is key after SCID diagnosis

August 01, 2022

Evangelina, born with ADA-SCID, thrives after gene therapy

July 15, 2022

SCID Family Day provides outreach to Amish community

July 14, 2022

Parental mental health: Experiences across the SCID journey

July 14, 2022

(Español) Parental mental health: Experiences across the SCID journey

July 14, 2022
laptop

What's to come - Long term follow up and SCID

July 06, 2022

SCID Compass Lunch and Learn: PIDTC & IDF neurodevelopmental study

July 06, 2022

Mental health & coping with a SCID diagnosis

July 06, 2022
Infant with mom

Premature infant surveillance & quality improvement study

July 06, 2022
laptop

SCID in the Irish traveler community

July 06, 2022
Compass

SCID Summit: A parent's journey with ZAP70 deficiency

July 06, 2022
Family dancing

Family planning considerations for SCID

July 06, 2022

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

June 13, 2022

SCID advocate devotes herself to helping parents navigate medical world

May 13, 2022

SCID carrier discussion explores family planning, mental health

May 05, 2022
Person typing on a computer

Families help shape SCID Compass Family Planning Guide

April 28, 2022

Survey explores provider SCID knowledge

April 25, 2022
Person typing on a computer

SCID newborn screening brings molecular shift to North Carolina

April 12, 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

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.