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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.

Child receiving vaccine

Statement regarding the leadership of the U.S. Department of Health and Human Services

December 02, 2024
Man talks to someone via video chat on his phone.

Sustaining the telehealth revolution

November 18, 2024
Woman getting a shot in her upper arm from healthcare provider.

Ensuring clinical trial diversity for emerging rare disease therapies

October 08, 2024
Woman pipetting in a research laboratory.

Program boosting rare disease treatments set to expire

September 11, 2024
IDF video

Legislative initiatives breakfast: 2024 PI Conference

August 05, 2024
Matthew Jacobsen at 13, far right, with his father, mother, Gina, and sister (from left to right).

UnitedHealthcare beneficiaries fight for access to immunoglobulin

March 14, 2024
Print Material Fallback

The continued need to protect the health of the immunocompromised

March 12, 2024
Stethoscope lying on top of insurance policy papers

Alternative funding programs hinder access to medications

February 26, 2024
Genetics

Addressing accessibility of gene and cell therapies

January 24, 2024
Technician holds vial of blood while checking paperwork.

FDA must consider patient access in seeking test regulations

December 05, 2023
Print Material Fallback

All Copays Count Coalition disappointed in decision to appeal court ruling

December 05, 2023
Woman shows pharmacist her phone.

Letter to Secretary Becerra on copay accumulator court decision

October 06, 2023
Carol Ann Demaret holds her son David Vetter in July 1977.

Carol Ann Demaret advocated for SCID—and IDF

September 20, 2023
Person typing on a computer

Update - Support the HELP Copays Act and fight unfair copay accumulators

May 02, 2023
Person typing on a computer

IDF serves thousands through education, advocacy, and research efforts

January 24, 2023
Person typing on a computer

Medicare Home IVIG Benefit: FAQs

January 19, 2023
IDF Podcast Graphic

Skilled Nursing Facilities with Dr. M. Elizabeth M. Younger

January 18, 2023
Person typing on a computer

History of the Medicare IVIG Access Demonstration Project

January 02, 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.

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.