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 Jeffrey Modell Centers Network to help put an end to an often lengthy diagnostic odyssey and improve treatment and care options for patients living with PI around the world.
Some rare diseases share common symptoms, which may impact the diagnostic odyssey and leave patients and families confused or uncertain when they are simply searching for answers. This is why one of our first projects was to create the 10 Warning Signs of PI, now available in over 50 languages. It’s our hope that by spreading awareness and educating more people about rare diseases like PI, there will be more opportunities to provide patients and their families with a sense of relief, improved quality of life, and a chance to better understand their rare disease.
Thanks to the remarkable advances in immunology and genetic sequencing, there are more options than ever to help ensure the earliest possible diagnosis and the chance to live a full life! Today, we work with physicians and researchers at over 400 institutions in 88 countries—and we’re still growing.
Searching for answers? Find an expert immunologist near you.