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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.

Family navigates toddler’s chronic granulomatous disease

November 29, 2022
Person typing on a computer

IDF Peer Support volunteers provide encouragement and assistance

November 14, 2022
Person typing on a computer

Journal chronicles bone marrow transplant for CGD

September 29, 2022

XLA Life supports community with content, webinars, research

September 27, 2022

Family coping with chronic granulomatous disease relies on tight bonds

August 31, 2022

Donor spotlight: Nupur Murthy

July 21, 2022

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

July 15, 2022
Compass

SCID Summit: A parent's journey with ZAP70 deficiency

July 06, 2022
London

Donor spotlight: London

June 23, 2022

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

June 13, 2022
Person typing on a computer

Donor spotlight: Reverend, Freddye James, D.MIN.

May 27, 2022

SCID advocate devotes herself to helping parents navigate medical world

May 13, 2022
The Lanier Family

Donor spotlight: The Lanier family

April 22, 2022
Mato family

Advocacy, provider support critical in helping family cope with CGD

March 25, 2022

Toddler with ADA-SCID waits for life-saving treatment

March 15, 2022
Casey Warford

'Take the reins of your own healthcare'

February 28, 2022
Person typing on a computer

Donor spotlight: Beth Sheridan

February 25, 2022
Solene

'Even in the darkest times, there is hope'

February 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.