Resources for National Science Week
August 2025 – We’re celebrating National Science Week! At the Jeffrey Modell Foundation, science is at the center of our work. From identifying the gene...
Navigating PI
Resources that support patients and family members understand their diagnosis, treatments, and other elements of the Primary Immunodeficiency experience.
#WeArePI – The Importance of Newborn Screening
This Newborn Screening Awareness Month, we’re shining a light on the crucial need for Newborn Screening for Severe Combined Immunodeficiency (SCID)! Read below for this month's #WeArePI collaborati...
#WeArePI - Talking to School Nurses
Back to school with Primary Immunodeficiency can be challenging, but we’re here to help! Read below for this month's #WeArePI tips, in collaboration with the Immune Deficiency Foundation, about how...
What To Do When Insurance Doesn’t Cover Your Prescription
Your prescription isn’t covered. Now what?Don’t panic. The process can be time-consuming and challenging, but there are steps you can take with your doctor and insurance compan...
#WeArePI Challenge - The Impact of Treatment
We are excited to share November's #WeArePI challenge in collaboration with the Immune Deficiency Foundation (IDF): How has treatment impacted an...
Activities During Ig Infusion
Today is day four of International Plasma Awareness Week! Today we’re sharing some ideas of how to spend time during your infusion:Read books or ma...
Newborn Screening Word Search
We created a brand-new word search all about Newborn Screening to help kids learn and have fun in the process! You can even print out a copy to share with your friends. Can you find these words?
#WeArePI Back to School Tips
We’re excited to share our latest #WeArePI collaboration with the Immune Deficiency Foundation (IDF): How do you prepare for a new school year?Primary Immunodeficiency is unpredictable and o...
Exercise, Diet, and Our Immune System
Your immune system works hard 24 hours a day, 7 days a week to protect you from bacteria, infections, germs, and more! People living with Primary Immunodeficiency are sick more often than others an...
Back to School Checklist
We know that planning ahead is often necessary due to the unpredictable nature of Primary Immunodeficiency, so we created a checklist to help you and your child prepare...
The Cost of Care
Did you know that early diagnosis saves the United States healthcare system $97,488* per patient? Not only does early diagnosis save lives and improve quality of life, but it also ...
Activities During Infusion
Today we’re sharing some ideas of how to pass the time during infusion. Ig infusions are made from donated plasma that contains lifesaving antibodies so that people living with Primary Immunod...
Respecting Invisible Illnesses
“But you don’t LOOK sick…"How many times have you or your loved one heard this statement? Primary Immunodeficiencies are known as invisible illnesses, which means patients may experience com...
The Importance of Family History
The tenth warning sign of Primary Immunodeficiency is…family history. Primary Immunodeficiencies are genetic, which means they run in the family and may increase the risk of inhe...
Activity Preparation Checklist
We know that sometimes extra planning is required for children and families living with PI due to its unpredictable nature. To help you plan for different activities, we created a checklist of info...
All About Plasma
For some people living with PI, plasma may be the difference between life and death. But what exactly is plasma, and how does it help to save lives?Plasma contains antibodies, water, salts, ...
Spy the 10 Warning Signs of Primary Immunodeficiency
Your Family Doctor is the first physician you see from a young age, and they are on the first line of defense in recognizing repeated infections. It’s essential that Family Doctors are familiar wit...
Funny Immunology Books
Want to learn more about Primary Immunodeficiency in a fun and interesting format? Check out the Funny Immunology book series written by several of our expert physicians! The books are
Caregiver Resources - International Day of Families
In honor of International Day of Families, we’re sharing our tips for finding caregiver resources. We know that being a caregiver, whether for a child or adult, can be overwhelming at times. It’s i...
Activities for Kids
Did you know that we have an entire section of our website dedicated to activities for kids? As a patient support organization, it’s a...
WPIW – Regional Toolkits
In honor of WPIW this year, we created the JMF regional toolkits to streamline the diagnostic odyssey. It’s our goal to reduce the burden that so many patients and families experience by providing ...
World Health Day – Access to Care
Today is World Health Day! This year’s theme is “Health for All.”We know that barriers to care result in a prolonged diagnostic journey, without genetic evaluation, and sometimes, unknown di...
Rare Disease Week – Rare Disease Statistics
Tomorrow is Rare Disease Day, the rarest day of the year! We hope you’ve enjoyed learning more about the rare disease community over the past few days. To round off the week, we want to share a few...
Rare Disease Week – The Diagnostic Odyssey
Did you know that it takes an average of 6-8 years for patients living with a rare disease to be properly diagnosed? We established the
JMF Patient Resources
Above all, we at the Jeffrey Modell Foundation are dedicated to supporting our global patient community. It’s our goal to make life easier, reduce burdens, and enable as many people as possible to ...
Educational Materials for Physicians, Researchers and Nurses
An essential part of our mission is creating and disseminating useful educational materials that can be used by all physicians and researchers, nurses, residents, post-doctoral fellows, and other i...
Donate Plasma to Save a Life
Did you know that plasma can’t be made in a lab? Donated plasma from healthy donors is used to create lifesaving treatments for people living with PI to help their immune systems stay healthy and s...
Preparing for Plasma Infusion (Ig Therapy)
It’s day four of International Plasma Awareness Week! Today we are sharing some helpful ideas for how to prepare for your plasma infusion (Ig therapy).Before your treatment begins, you’ll me...
Newborn Screening - Treatment Overview
Since 1987, the mission of the Foundation has been earliest possible diagnosis. Primary Immunodeficiency is a genetic condition that is chronic, serious, and sometimes life-threatening if not detec...
Caregiver Health - Importance of Newborn Screening
As parents, we are all too familiar with the uncertainty that comes with a Primary Immunodeficiency diagnosis. There was limited medical knowledge when Jeffrey was diagnosed with hypogammaglobuline...
Invisible Illness
On the outside, Jeffrey was so beautiful and looked so normal. But inside, his immune system, his lifeline, was seriously flawed.Primary Immunodeficiency is known as an invisible illness—mos...
Caregiver Health – Resources and Support
When Jeffrey experienced the recurring infections typical of Primary Immunodeficiency, there were so many lonely nights in the hospital. It was heartbreaking to hear our child ask us to Do Somet...
The Importance of Access to Care
When Jeffrey was young, we travelled all over the world to get answers and meet with the most innovative and well-regarded physicians of the time. We were able to provide him with the best possible...
Antibiotics - Treatment Overview
Not all Primary Immunodeficiencies can be treated in the same way. Today, we’re continuing our treatment overview series by explaining how antibiotics are used to manage and treat ...
Caregiver Health: Finding Positivity
When we learned about Jeffrey’s hypogammaglobulinemia diagnosis, there were so many anxieties caused by limited medical knowledge at that time. We had everything and lost everything at the same tim...
The Importance of Genetic Sequencing - The JMCN is Doing Something!
We never could have imagined all of the scientific discoveries and miracles over the past thirty-five years. While Jeffrey struggled with his condition, we never met another family and Jeffrey neve...
4 Stages of Testing for Primary Immunodeficiency
The Jeffrey Modell Foundation created the 4 Stages of Testing Poster in the 1990s to assist physicians in making a Primary Immunodeficiency diagnosis. The poster has been translated into more th...
Gene Therapy - Treatment Overview
After Jeffrey was diagnosed, we travelled all over the world to get answers—Jeffrey could have anything he wanted, but we couldn't give him his health. He underwent some of the most innovative trea...
Tienes Que Saber
LA VOZ DE VICKI
"You Gotta Know!"
My ins...
The Comeback of the Physician “House Call”
There has been a lot of conversations surrounding the re-emergence of physician “house calls.”What does this mean for those affected by Primary Immunodeficiency? It could be very, very helpf...
School Nurses: Our “First Line of Defense” Against Primary Immunodeficiency!
We all remember going to the School Nurse as a child, whether we had a tummy ache or looking for a lollipop.However, let us not forget the vital role of a School Nurse. School ...
Bone Marrow Transplant - Treatment Overview
For patients living with certain Primary Immunodeficiencies, a bone marrow transplant may be the appropriate solution for treatment. A bone marrow transplant is often suggested for some of th...
JMF Infusion Centers
Our global network is made up of hundreds of expert researchers and physicians who work tirelessly to find better treatments and possible cures for PI. Did you know that there are two Jeffrey Model...