Sign in

Immune Deficiency Foundation

@immunedeficiency.bsky.social
149 followers 2 following 31 posts

The Immune Deficiency Foundation improves the diagnosis, treatment, and quality of life of people affected by primary immunodeficiency.

PostsRepliesMedia
Immune Deficiency Foundation @immunedeficiency.bsky.social · 22/09/2026
Meet Cannan. Living with CVID, he relies on IVIG therapy, made possible by plasma donors, to receive the antibodies his body can't make. We were honored to share his family's story to help raise awareness about plasma donation. 🎥 bit.ly/4xnKMZe
bit.ly
Cannan’s Story: How Plasma Donation Changed One Young Life
Cannan Caton lives with Common Variable Immune Deficiency (CVID), a rare disorder that makes it hard to fight infections. He depends on intravenous immunoglobulin (IVIG) therapy—made possible by plasma donation and the therapies Fresenius Kabi helps mak...
011
Immune Deficiency Foundation @immunedeficiency.bsky.social · 18/09/2026
People who are immunocompromised deserve to be able to move within their communities, including going to work and attending public school, without fear of infection. . Read our full statement: bit.ly/3UPrDRG
031
Immune Deficiency Foundation @immunedeficiency.bsky.social · 15/09/2026
Thank you to Rep. John Joyce for opening the Immunocompromised Collaborative's briefing today and supporting H.R.8425 to strengthen access to childhood vaccines. High vaccination rates protect the 1 in 5 Americans who are immunocompromised, like panelist Bridget Collins.
011
Immune Deficiency Foundation @immunedeficiency.bsky.social · 14/09/2026
September is Newborn Screening Awareness Month! #Newbornscreening is an essential #publichealth service that screens babies for serious but treatable medical conditions. #2026NBS
021
Immune Deficiency Foundation @immunedeficiency.bsky.social · 03/09/2026
Check out CDC's health advisory about the risk of severe neurological disease and death from arboviruses in people being treated with B cell-targeted therapies: bit.ly/4zIoenq. #WestNileVirus #CART #BloodCancer #Autoimmune
021
Immune Deficiency Foundation @immunedeficiency.bsky.social · 01/09/2026
People who are #immunocompromised should be able to move within their communities w/o fearing for their lives. Immunocompromised Collaborative statement: bit.ly/4xxYkl1 @kidneyfund.bsky.social @autoimmuneassoc.bsky.social @healthhiv.bsky.social @lupus.org @LymphomaResearchFoundation.
primaryimmune.org
Administration’s executive order risks health and quality of life of Americans most vulnerable to infections | Immune Deficiency Foundation
We urge the administration to consider the rights of all people, including those who are immunocompromised or cannot be safely vaccinated, and rescind this dangerous executive order.
031
Immune Deficiency Foundation @immunedeficiency.bsky.social · 27/08/2026
Our 2025 Annual Report is here. 34,034 patients served. 227 legislative meetings. 600 active volunteers — a community that showed up again and again for people living with PI. The full story (& the people behind the numbers) → bit.ly/4zB0y4i
051
Immune Deficiency Foundation @immunedeficiency.bsky.social · 25/08/2026
Courtney Ampezzan, diagnosed with #WHIMsyndrome (a rare #PrimaryImmunodeficiency), developed cancer 2 years ago and underwent a bone marrow transplant. Now recovering well, she's organizing a team for the 2026 Walk for PI in Boston! bit.ly/4c547Wx
primaryimmune.org
Woman with WHIM syndrome receives hematopoietic stem cell transplant | Immune Deficiency Foundation
The more you understand about primary immunodeficiency (PI), the better you can manage it. Learn about PI diagnoses and treatment options.
031
Immune Deficiency Foundation @immunedeficiency.bsky.social · 24/08/2026
🎙New episode: Georgetown ethics professor @peterjaworski.bsky.social joins us to bust the myths blocking a stronger global plasma supply — the lifeline behind treatments for the primary immunodeficiency community. 🎧 Tune in now bit.ly/4hQ1pYJ
primaryimmune.org
Plasma donation myths with Professor Peter Jaworski | Immune Deficiency Foundation
Georgetown ethicist Peter Jaworski discusses the global plasma shortage and myths surrounding plasma donation.
042
Immune Deficiency Foundation @immunedeficiency.bsky.social · 13/08/2026
A voluntary withdrawal is being conducted for one lot of Gamunex-C and one lot of GammaKed as a precautionary measure due to an increased rate of allergic/hypersensitivity reactions. A small number of the reactions were considered medically significant. bit.ly/3TROY4E
primaryimmune.org
Gamunex-C, GammaKed lots withdrawn | Immune Deficiency Foundation
Grifols is voluntarily withdrawing one lot of Gamunex-C, 40G vials, and one lot of GammaKed, 20G vial.
011
Immune Deficiency Foundation @immunedeficiency.bsky.social · 03/08/2026
72 million+ Americans who can't be vaccinated or don't respond to vaccines rely on their neighbors, family, and friends to stay safe from preventable infectious diseases. It's National Immunization Awareness Month—are you up to date? bit.ly/44VHxf2 #ProtectTheImmunocompromised
bit.ly
Protecting all Americans from infectious diseases | Immune Deficiency Foundation
Recent changes to the Advisory Committee on Immunization Practices (ACIP) and proposed legislative efforts--such as the “End the Vaccine Carveout Act”--are eroding public confidence in vaccines.
031
Immune Deficiency Foundation @immunedeficiency.bsky.social · 23/07/2026
⏰ Sept 14 deadline: the Immune Deficiency Foundation's 2026 #ResearchGrant is open. We're awarding $25K–$50K to support primary immunodeficiency research. Open to U.S.-based academic researchers. Med/grad students welcome with mentor support. Apply and learn more → bit.ly/4ylolEV
031
Immune Deficiency Foundation @immunedeficiency.bsky.social · 07/07/2026
Researchers have launched a multi-site research study, called MIRACLE, to help answer questions about fertility and pregnancy in people with primary immunodeficiency. Learn more and get involved: bit.ly/3SOOVG6.
bit.ly
Patient questions drive study of PI, fertility, and pregnancy | Immune Deficiency Foundation
Researchers have launched a multi-site research study, called MIRACLE, to help answer questions about fertility and pregnancy in people with primary immunodeficiency (PI).
021
Immune Deficiency Foundation @immunedeficiency.bsky.social · 30/06/2026
The Immune Deficiency Foundation's 2026 National Conference is a wrap! Is it 2028, yet?
031
Immune Deficiency Foundation @immunedeficiency.bsky.social · 30/06/2026
🚨 This just in from Anthem BCBS: 'We are clarifying that members who are currently receiving & clinically stable on SCIG therapy may continue receiving SCIG therapy.' Thank you to all who alerted us to the issue & helped us make our case! And thank you to Anthem BCBS for addressing our concerns.
041
Immune Deficiency Foundation @immunedeficiency.bsky.social · 28/06/2026
San Antonio, thank you. 🤠💙 Mosaic 2026 is a wrap—and every piece added strength. We'll see you at the next one. 👀
021
Immune Deficiency Foundation @immunedeficiency.bsky.social · 26/06/2026
Educational sessions at Moasic 2026 reflect the complexity of primary immunodeficiency—covering SCIG/IVIG, GI health, CVID genetics, insurance navigation, and care transitions, led by top clinicians. Proud to meet our community where they are. #Mosaic2026 #PrimaryImmunodeficiency
011
Immune Deficiency Foundation @immunedeficiency.bsky.social · 26/06/2026
The 2026 Immune Deficiency Foundation National Conference officially kicked off in San Antonio, TX. Our community came together for the Welcome Reception this evening. We're proud to be surrounded by patients, caregivers, clinicians, and advocates who make this community strong. #ImmuneDeficiency 💪
011
Immune Deficiency Foundation @immunedeficiency.bsky.social · 24/06/2026
We're in San Antonio for the 2026 National Conference and will be out of the office Thursday, June 25, and Friday, June 26! We'll return on Monday, June 29th!
011
Immune Deficiency Foundation @immunedeficiency.bsky.social · 05/06/2026
Can't believe Advocacy Day was a month ago! We still need your support: tell your legislators why vaccine access matters and how important getting Ig therapy is in skilled nursing facilities (H.R. 8528, the PI Post Acute Access Act): bit.ly/4umitrL.
primaryimmune.org
Action Alerts | Immune Deficiency Foundation
A strong, united voice can influence public policy issues that impact your health and access to care. Reaching out to your public officials is simple and quick with the Immune Deficiency Foundation Ac...
021
Immune Deficiency Foundation @immunedeficiency.bsky.social · 14/05/2026
Thanks to Advocacy Day participants' efforts, Reps. Tim Moore and Don Davis have joined Reps. Doris Matsui & Adrian Smith to sponsor H.R. 8528, the PI Post Acute Access Act 🎉 It addresses #PICommunity barriers to receiving Ig replacement therapy in skilled nursing facilities: bit.ly/3PleJYX
primaryimmune.org
Protecting access to immunoglobulin therapy | Immune Deficiency Foundation
IDF advocates with policymakers and payers for insurance coverage of immunoglobulin (Ig) replacement therapy for those with PI, including access to specific Ig products, modes of administration, and s...
041
Immune Deficiency Foundation @immunedeficiency.bsky.social · 08/05/2026
In an op-ed for Real Clear Health, medical director Dr. Maria Paula Henao wrote about the serious consequences of vaccine policy disruption for immunocompromised Americans. Read it here: bit.ly/4ndReh4
031
Immune Deficiency Foundation @immunedeficiency.bsky.social · 01/05/2026
Advocacy Day was a smashing success! Thank you to Representatives Moore, Massie, Hernández, Carter, and Knott for taking the time to meet our advocates personally.
031
Immune Deficiency Foundation @immunedeficiency.bsky.social · 30/04/2026
Just a few highlights from the 110+ meetings we had today. Thank you to all our advocates and all of the offices we met with! If you haven't done it yet, you can still add your voice by sending an Action Alert: bit.ly/4ef3D1U.
Jessica and 4-year-old Luca in front of the Capitol dome.President and CEO Jorey Berry and Medical Director Paula Henao pose with Ironmouse!A young member of the PI community shares her story with a staffer from Sen. Bill Cassidy's office.PI community members discuss the importance of widespread vaccination with a staffer from Sen. Warnock's office.
0153
Immune Deficiency Foundation @immunedeficiency.bsky.social · 30/04/2026
We’re on Capitol Hill today representing the #PICommunity! Help us advocate for vaccine access and H.R. 8538, the PI Post Acute Care Act: www.votervoice.net/IDF/Campaign...
Volunteers pose in front of the U.S. Capitol.
042
Immune Deficiency Foundation @immunedeficiency.bsky.social · 29/04/2026
Help us prepare for Advocacy Day, #PICommunity! This year, we're advocating for strong federal vaccine policy and H.R. 8538, the PI Post Acute Access Act. Learn more and use our Action Alert system to tell your legislators why you support these priorities: bit.ly/423DKuE.
primaryimmune.org
Action Alerts | Immune Deficiency Foundation
A strong, united voice can influence public policy issues that impact your health and access to care. Reaching out to your public officials is simple and quick with the Immune Deficiency Foundation Ac...
032
Immune Deficiency Foundation @immunedeficiency.bsky.social · 09/04/2026
We support @idsainfo.bsky.social 's recommendation that all individuals ages 18+ who are #immunocompromised receive one dose of a respiratory syncytial virus (RSV) vaccine. Read our statement, then talk to your doctor: bit.ly/4vjT03I.
primaryimmune.org
Foundation supports broad RSV vaccination in immunocompromised adults | Immune Deficiency Foundation
While broadly following AAFP and AAP guidelines, the foundation supports IDSA’s new recommendation that all immunocompromised adults ages 18+ receive a respiratory syncytial virus (RSV) vaccine.
010
Immune Deficiency Foundation @immunedeficiency.bsky.social · 16/03/2026
Last week, @fda.gov expanded approval for the #RSV vaccine Arexvy to those 18-49 years old at high risk, including people who are #immunocompromised. Check out this article on all the RSV prevention options: bit.ly/4sHRYwv.
primaryimmune.org
Update: What RSV preventatives mean for those with PI | Immune Deficiency Foundation
Respiratory syncytial virus (RSV) can cause severe respiratory infections. Merck's Enflonsia is the third monoclonal antibody approved to prevent RSV in infants born during or entering their first RSV season.
021
Immune Deficiency Foundation @immunedeficiency.bsky.social · 20/02/2026
Meet our new medical director, Dr. Paula Henao! Dr. Henao is an associate professor of allergy, asthma, and immunology at Penn State Health Milton S. Hershey Medical Center. Read more: bit.ly/4ryaFTa
primaryimmune.org
Immune Deficiency Foundation names new medical director | Immune Deficiency Foundation
The Immune Deficiency Foundation names Paula Henao, MD, as new medical director.
042
Immune Deficiency Foundation @immunedeficiency.bsky.social · 23/01/2026
Meet our 2025 Research Grant Program awardees: Drs. Eric Allenspach, Caroline Kuo, Ashley Lee, and Patrick O'Connell. They're taking on rare #PrimaryImmunodeficiencies to tease apart biology and develop treatments. bit.ly/45sRBwD
primaryimmune.org
Grantees tackle rare PIs from basic biology to treatment | Immune Deficiency Foundation
2025’s four Research Grant Program awardees will use their funding to better understand some of the rarest primary immunodeficiencies (PIs) and develop diagnostics and treatments.
093