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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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New diagnostic code for ultrarare primary immunodeficiency promises multiple benefits

August 02, 2022
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State of the states: 2022 policy advocacy overview

July 25, 2022
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Why laboratory-developed tests’ fate matters for rare disease patients

June 24, 2022
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Workplace accommodations for the immunocompromised as pandemic wanes

March 30, 2022
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IDF advocate connections: becoming a rare disease advisory council member

January 31, 2022
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Ensuring access to care tops IDF’s policy priorities

January 27, 2022
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Why antimicrobial resistance matters for the immunocompromised

November 22, 2021

Report explores telehealth for SCID

November 02, 2021
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Model Coverage Policy for Ig Replacement Therapy

July 22, 2021
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Newborn Screening Saves Lives Reauthorization Act passes House and moves to Senate

July 25, 2019
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IDF supporting the Newborn Screening Saves Lives Reauthorization Act of 2019

May 31, 2019
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PI community represented at Senate committee hearing on preventable diseases and vaccines

March 06, 2019
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All 50 states now screening newborns for severe combined immunodeficiency (SCID)

December 11, 2018
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The history of SCID newborn screening

December 10, 2018
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Prescription costs and co-pay accumulators

September 18, 2018

The importance of the Medicare SCIG Home Infusion Benefit to the PI community

July 04, 2017

IDF Advocacy Nevada testimony

May 09, 2017

2017 testimony on SCID newborn screening in Arizona

March 20, 2017

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.