Kids get sick 🤒 But how often is too often? Primary Immunodeficiency (PI) causes frequent #infections that can be hard to cure. 1:500 people are affected by PI. If your child exhibits 2 of the #10WarningSigns 🚨, speak to a physician. See the signs at bit.ly/3wzDmnm

Being prepared can make all the difference, especially for those living with chronic conditions. 🩵 An emergency toolkit helps ensure your health needs are understood, even in stressful or unexpected situations. From having a medical ID to keeping a clear personal health summary and having medications ready, small steps can provide clarity, safety, and peace of mind when it matters most. Planning ahead isn’t just helpful - it can be lifesaving. #ChronicIllness #LivingWithPI #Immunology #JMF #PatientSupport

We advocate for the PI community, of course we strive for earliest possible diagnosis #PrimaryImmunodeficiency

Plasma donations help create life-saving therapies for people living with Primary Immunodeficiency and other conditions – people who rely on these treatments every day to stay healthy. Be part of something bigger. #DonatePlasma. 💙

MYTH: If basic tests are normal, nothing is wrong FACT: Many Primary Immunodeficiencies require specialized testing – and are often missed for years. For many people living with PI, the hardest part isn’t just the symptoms – it’s the journey to a diagnosis. This is why patient advocacy is so important. Advocating for yourself or a loved one can mean: Asking for further testing Seeking second opinions Pushing for answers when something doesn’t feel right That’s why our mission here at JMF is earliest possible diagnosis – it can lead to better treatment, fewer complications, and improved quality of life. Awareness empowers advocacy, and advocacy leads to answers.

Donate plasma. SAVE LIVES. #PrimaryImmunodeficiency #DonatePlasma #Plasma

🧬 Genetic counseling is a process that helps individuals and families understand the likelihood of a genetic condition and what that risk may mean for them. For families affected by #PrimaryImmunodeficiency, genetic counseling can provide clarity, guide decisions about genetic testing, and support earlier diagnosis and treatment. Understanding your family history isn’t just information - it can be lifesaving. 💙 #GeneticCounseling #PrimaryImmunodeficiency #GeneticTesting #PIAwareness

Too often, the signs of primary immunodeficiency are mistaken for “common” illnesses — delaying diagnosis and care for those who need it most. This article underscores the importance of looking beyond recurring infections and recognizing when something more serious may be at play. Awareness is the first step toward earlier diagnosis and better outcomes. JMF is proud to be highlighted as a global resource, helping to guide patients, families, and clinicians toward the tools and knowledge needed to identify PI sooner. 🔗 Read more: bit.ly/4uZT4pn #PrimaryImmunodeficiency #RareDisease #GlobalHealth #EarlyDiagnosis #PIAwareness

This incredible event, led by Dr. Liliana Bezrodnik and Dr. Gisela Seminario at the Jeffrey Modell Center Argentina during Primary Immunodeficiency Week, brought together more than 200 patients and family members from across the country 💙 We are so proud to support initiatives like these through our WIN Grant Program and grateful to the dedicated teams around the world helping the PI community grow stronger every day.

Earlier this month, the JMF team traveled to New Orleans for the Clinical Immunology Society (CIS) Annual Meeting, bringing together physicians, scientists, advocates, patients, and families from around the world to advance the future of clinical #immunology. During the meeting, JMF Scientific Director Jessica Quinn presented a poster highlighting findings from an upcoming publication on the Jeffrey’s Insights genetic sequencing program. We were proud to see our WINMD Grant recipients attending and presenting research posters at CIS. Supporting the next generation of researchers and innovators in immunology remains a vital part of JMF’s mission. While in New Orleans, we also hosted an in-person meeting of our Patient & Family Advisory Board (#PFAB), uniting patients and families affected by STAT1 GOF, STAT3 GOF, and JAK1 GOF to help create educational resources that truly reflect and amplify the patient experience. We are honored to continue supporting collaboration, research, education, and patient advocacy within the global PI community 💙 #CIS2026 #ClinicalImmunology #PrimaryImmunodeficiency #PICommunity #RareDisease #PatientAdvocacy #NOLA #JMFPFAB

As genomic technologies advance, so does our ability to diagnose Primary Immunodeficiency with greater speed and precision. This new research in Frontiers in Genetics explores the role of artificial intelligence in identifying genetic variants associated with inborn errors of immunity — while reinforcing the continued importance of expert clinical interpretation. We are proud to see the global impact of the Jeffrey Modell Foundation network recognized in this study, supporting diagnosis, research, and collaboration across centers of excellence worldwide — and helping connect patients to answers sooner. Innovations in genomics, combined with strong global networks, are key to shortening the diagnostic journey and improving outcomes for patients with rare immune disorders. 🔗 Read the full study: bit.ly/414lvok #PrimaryImmunodeficiency #Genomics #RareDisease #PrecisionMedicine #AIinHealthcare #EarlyDiagnosis

A major step forward for the Primary Immunodeficiency community 💙 The U.S. Food and Drug Administration has approved a new gene therapy for Wiskott-Aldrich syndrome – offering a potentially long-lasting treatment that uses a patient’s own cells to help restore immune function. For patients and families, this represents more than just scientific progress – it’s hope for safer, more effective care and a future with fewer infections and complications. Advances like this highlight the power of research, innovation, and advocacy in changing lives. Read the press release here: bit.ly/42cMqyH #PrimaryImmunodeficiency #PIAwareness #GeneTherapy #FDAApproval #Immunology #MedicalInnovation

Honoring excellence in immunology 🧬✨ We were proud to present the 2025 Jeffrey Modell Prize to Dr. Patricia Rodriguez Morales, standing alongside Harvard Immunology Graduate Committee program directors Dr. Shiv Pillai and Dr. Wendy Garrett. This award celebrates a graduating PhD student whose research is advancing the future of immunology. The evening also featured opening remarks from Dr. Fred Alt, representing the Jeffrey Modell Foundation at this special annual event at Harvard Medical School. Here’s to the researchers, mentors, and leaders driving progress forward. 💙 #Immunology #MedicalResearch #JeffreyModellFoundation #PIAwareness #FutureOfMedicine #HarvardMedicalSchool

For many people living with chronic illnesses like Primary Immunodeficiency, Spring isn’t just a season of renewal - it can also bring new challenges. Rising pollen, mold exposure, and shifting temperatures may lead to increased symptoms and added day-to-day management. While we can’t control the pollen count, there are ways to help reduce exposure and support your health during this time Small steps can make a real difference when your immune system is already working overtime. 💙 #PIAwareness #ProtectYourHealth #AllergySeason #Immunocompromised

Today is #CDGAwarenessDay 💜 Congenital Disorders of Glycosylation (CDG) are a group of rare genetic conditions that affect how the body builds essential proteins – impacting multiple systems, including the immune system. Because glycosylation is critical for immune function, several types of CDG are also classified as Primary Immunodeficiencies (PI). Greater awareness means earlier diagnosis, better care, and continued progress toward targeted treatments. #PrimaryImmunodeficiencies #RareDiseaseAwareness #ChronicIllnessAwareness #InvisibleIllness

Family can mean so many things – but for those affected by Primary Immunodeficiency, it often means being a source of strength, support, and care. From caregivers to chosen family, these connections play a vital role in navigating life with PI. Today, on International Day of Families, we celebrate the people who show up, stand by, and make a difference every day. 💜 #InternationalDayOfFamilies #PrimaryImmunodeficiency #PI #Caregivers #FamilySupport #Community

We’re proud to share a publication resulting from the JMF c.h.i.l.d.r.e.n! Research Program grant, “Building Capacity Towards Primary Immunodeficiency Disorders Research, Diagnosis, and Clinical Management in Uganda.” This work reflects meaningful progress in strengthening awareness, education, and diagnostic capacity for Primary Immunodeficiencies (PI) in Uganda. Key milestones to date include: • Integration of a dedicated PI module into the MSc Immunology and Clinical Microbiology curriculum at Makerere University • Early efforts to expand training opportunities for clinicians and trainees in PI detection and laboratory diagnosis, with ongoing pursuit of additional funding to sustain and scale this work. We are excited to see these foundations continue to grow and translate into improved recognition and care for patients living with PI. Read the full publication here: bit.ly/4sYOB46 #PrimaryImmunodeficiency #GlobalHealth #MedicalEducation #Immunology #CapacityBuilding #Uganda #ResearchImpact

Happy #InternationalNursesDay! 🫀 Today, we celebrate incredible nurses like Diemmai, a dedicated pediatric infusion nurse at Texas Children's Hospital. For more than 20 years, Diemmai has cared for patients with Primary Immunodeficiency and their families – helping create a sense of comfort, safety, and “normalcy” during treatment. Inspired by her love for children and shaped by her own experience as a mother, she brings deep empathy to every patient interaction 💙. From small acts of kindness to unforgettable patients like Logan of #TeamSuperman, Diemmai’s work is a powerful reminder of the impact nurses have every day. Thank you for your compassion, strength, and dedication. ✨ Learn more about Diemmai and her work here: bit.ly/4v1BMYj

🎨 Calling the Rare Disease Community: Share Your Story Through Art! This July, SketchNF is opening a powerful rare disease art exhibit at Positive Exposure Gallery – and submissions are now open! This show is more than an exhibit – it’s a space for individuals and families across the rare disease community to be seen, heard, and reflected through art. Whether you’re a patient, caregiver, advocate, or provider, your perspective matters. 🖌️ Submit original artwork your personal story 🌍 Open to all rare diseases, all ages 📍 Exhibit opens July 7 in NYC ⏳ Submission deadline: June 1st 🔗 If you’re interested, get started here: bit.ly/4mRXpHp Together, we can amplify the voices of those living with rare conditions and build a stronger, more connected community. Please help us spread the word and encourage participation 💙 #RareDisease #RareDiseaseAwareness #PatientVoices #ArtForAdvocacy #HealthcareCommunity #SketchNF #PositiveExposure #JMF

What people with PI wish others knew 💙 We asked our community to share their experiences – and their words say so much about what it’s really like living with Primary Immunodeficiency. From how even a “simple” cold can cause serious disruption, to the reality that treatment is lifelong and not a cure, to the fact that many people look well on the outside while still feeling unwell on the inside – these reflections highlight the complexity and invisibility of PI. Thank you to everyone who shared their voice with us – your stories help build understanding, empathy, and awareness 💙 #InvisibleIllness #LivingWithPI #PIWarrior #RareDisease

May is #MentalHealthAwarenessMonth. Living with Primary Immunodeficiency can come with more than physical challenges - it can bring anxiety, exhaustion, and moments of feeling alone or misunderstood. This month, we’re shining a light on the emotional side of PI. If you’re navigating this, you are not alone, and your mental health matters just as much as your physical health. 🤍 #MHAM