Skip to main content
Immune Deficiency Foundation logo
Hugging

Get support

The Immune Deficiency Foundation is your home for hope.

Has your life been impacted by PI? When navigating symptoms, diagnosis, treatment, insurance, and emotions, find answers and connections here. 

Looking for more structured support?

Mental health professional Jodi Taub, LCSW, PLLC, leads three monthly virtual support groups. These groups provide a safe, judgment-free, and confidential virtual space to meet and explore shared experiences with other group members, facilitated by Taub. Participants must be 18 years of age or older.

  • Caregiver support group: This support group is open to parents, guardians, grandparents, aunts, and/or uncles of individuals diagnosed with primary immunodeficiency (PI). This group typically meets on the second Wednesday of the month for one hour beginning at 3:00 p.m. PT/4:00 p.m. MT/5:00 p.m. CT/6:00 p.m. ET.
  • Spouse/partner support group: This support group is open to spouses and partners of individuals diagnosed with primary immunodeficiency (PI). This group typically meets on the third Thursday of the month for one hour beginning at 3:00 p.m. PT/4:00 p.m. MT/5:00 p.m. CT/6:00 p.m. ET.
  • Young adult support group: This support group is open to young adults 18 to 30 years of age diagnosed with a primary immunodeficiency (PI). This group typically meets on the second or third Tuesday of the month for one hour beginning at 3:00 p.m. PT/4:00 p.m. MT/5:00 p.m. CT/6:00 p.m. ET.

See next meetings

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 just 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 on our website and YouTube page. If you only want to view our webinars, you can access them directly here

“I think that Immune Deficiency Foundation has such a welcoming community. If you are feeling a little bit lost or you’re having trouble keeping relationships or making friends, I think this is a wonderful opportunity to branch out of your social circle, go out of your comfort zone, and meet a lot of new people who can likely become lifelong friends.”

Victoria, pictured second from left with friends from the PI community
Victoria (pictured second from left) with IDF friends

Sharing experiences

It can be a healing experience to see how other people navigate their PI journey and to share your own story.

Three guys sitting and talking

Looking for other forms of support? 

Browse our list of organizations that offer support ranging from copay assistance to travel for specialty care to analyses of specific insurance plans.