Jeffrey Modell Foundation

Have you ever wondered how #PlasmaDonation works? Swipe through to find out! ➡️ Plasma donors play an essential role in helping those with #PrimaryImmunodeficiency and other conditions receive the treatments they need to live healthier, fuller lives. By donating plasma, you're not just giving a part of yourself—you’re giving someone a chance at a brighter future. To all the selfless plasma donors out there, thank you for your incredible gift. Your donation means the world to so many. 🙌 #PlasmaDonors #PlasmaSavesLives #DonatePlasma

We were honored to attend ESID 2024! ✨ It was an inspiring week connecting with leading experts, researchers, and advocates dedicated to advancing care and research in Primary Immunodeficiency (PI). 🌍💡 Events like this strengthen our commitment to improving early diagnosis, treatment options, and overall quality of life for those living with PI. Together, we’re moving science forward and supporting the PI community every step of the way! 💙 #ESID2024 #PrimaryImmunodeficiency #Immunology #ESID

What is #DiagnosticOvershadowing? Diagnostic Overshadowing happens when a healthcare professional attributes a patient's symptoms to their existing disorder, rather than investigating a possible co-morbid condition. This can lead to misdiagnosis, delayed treatment, and poor clinical outcomes. 🩺 After a diagnosis is confirmed, healthcare professionals may be more likely to link any new symptoms to the initial diagnosis rather than exploring alternate causes. This may result in delayed treatment and increased risk of additional health complications. 👩⚕️ Avoid diagnostic overshadowing by asking questions, doing research, communicating openly with your care team, and asking for second opinions if necessary. Remember, you are your own best advocate! #PrimaryImmunodeficiency #Immunology

🔬 Exciting Advances in Primary Immunodeficiency Research! 🧬 We’re thrilled to share groundbreaking news from Dr. Jordan Orange and team, who have shared results from the GUARDIAN Genome Screening study—a pioneering effort aimed at expanding #NewbornScreening using #GenomeSequencing for early actionable conditions. The GUARDIAN study explores the utility of whole genome sequencing (WGS) to identify 255 early onset #GeneticConditions in newborns from a diverse population. It highlights the feasibility and outcomes of expanding today’s standard newborn screening to include a broader set of #GeneticDisorders, enabling earlier detection and treatments so that all children can be afforded the best chance at a healthy life from birth. This study holds the promise of a future where earlier #diagnosis leads to better outcomes and improved quality of life for individuals affected by PI. 💙 At the Jeffrey Modell Foundation, our mission is to fight for earlier diagnosis, treatments, and cures, and support groundbreaking research like GUARDIAN. Together, we’re shaping a future filled with hope. To learn more about this incredible work, visit https://bwnews.pr/3AeFkiT. 🌟 #GUARDIANStudy #PrimaryImmunodeficiency #Immunology 

Meet Sam, a #CVID warrior! 💪⁠ Sam was diagnosed two years after her father passed away. Growing up, she watched him undergo weekly #IVIG infusions after being diagnosed with #hypogammaglobulinemia at 25. Now, Sam manages her PI with weekly #SCIG infusions, which help her lead a healthy, normal life despite her #ChronicIllness. She takes pride in showing others that she can do everything she did before her diagnosis—and even more! At 35, Sam is in her best physical and mental health. She loves staying active and enjoying time with others without the worry of getting sick. With two kids, a supportive partner, and a fast-paced job she loves, Sam continues to thrive! ❤️ Click here to read our latest blog post featuring Sam: https://bit.ly/3YgsMQ4 #Immunology #PIStrong #RareDisease #RaiseAwareness

In our #PIIdentified series, we explain the different types of Primary Immunodeficiencies, symptoms, diagnoses, and more. 👩🏫📖⁠ Today’s PI: WHIM Syndrome, an extremely rare and challenging-to-diagnose type of Primary Immunodeficiency (PI) in which the body’s immune system does not function properly, and has trouble fighting infections, especially respiratory, ear, and skin infections. Individuals with #WHIMSyndrome are more susceptible to life-threatening bacterial infections and to human papillomavirus (HPV) infections. Swipe through to learn more about #WHIM and stay tuned to learn about more types of PIs 💛⁠ What type of PI should we do next? Let us know in the comments 👇⁠ #RareDisease #Immunology #PrimaryImmunodeficiency

IVIG vs. SCIG: Do you know the differences? 💉 #IVIG is administered directly into a vein (intravenously) by a healthcare professional, typically once every 3 to 4 weeks. On the other hand, #SCIG is delivered into the fatty tissue under the skin and can be self-administered at home, with infusions ranging from 1 to 3 times per week, to once every two weeks. Have you or someone you know received IVIG or SCIG? We’d love to hear about your experience—share in the comments below! ⬇️ #PrimaryImmunodeficiency #PlasmaTreatment

At the Jeffrey Modell Foundation, we are dedicated to helping families and individuals living with #PrimaryImmunodeficiency (PI) by providing the support, resources, and guidance they need to thrive. We established the Roots & Wings program to provide travel (the “wings”) and related support (the “roots”) to families whose child has been identified with a potentially life-threatening Primary Immunodeficiency that requires lifesaving medical care far away from home. Together, we're helping those affected by PI take flight, with the strength to soar above challenges. 💙✨ Learn more or apply here: https://bit.ly/3zPDswT

Jennifer’s story is a powerful reminder of the challenges so many face in getting an accurate diagnosis for rare conditions like #WHIM syndrome. Her resilience and journey inspire us at the Jeffrey Modell Foundation to keep working towards early diagnoses and better care for those living with #PrimaryImmunodeficiencies and other #RareDiseases. Thank you, Jennifer, for sharing your experience and helping shine a light on the importance of awareness and progress in rare disease diagnosis. #RareDisease #WHIMSyndrome #PatientStories #PrimaryImmunodeficiency

We developed the "4 Stages of Testing" for #PrimaryImmunodeficiency to assist physicians in diagnosing PI more effectively. These guidelines have been translated into over 50 languages to enhance #diagnosis worldwide. 🌎️🧬🩺. You can download the 4 Stages of Testing posters in your preferred language(s) here: https://bit.ly/3w3Z5rv