Rare Disease Day – Get Involved!

Today is Rare Disease Day, the rarest day of the year! We are proud to spotlight the over 300 million people worldwide living with a rare disease, and hope you'll continue to join us on our mission to support rare disease patients worldwide by providing hope for a better future.

Rare doesn’t mean alone. We invite you to learn more about our family’s experience of living with Primary Immunodeficiency by watching our documentary Do Something: The Jeffrey Modell Story. Despite living through loss, Fred and I turned to each other and found the strength to fulfill our promise to Jeffrey and resolved to “Do Something” by creating the Foundation in his memory.

Thanks to Jeffrey’s pleas for us to “Do Something,” millions of lives have been forever changed throughout our thirty-six years of work supporting the PI community. Watch the documentary on our YouTube channel, or find it in 7 languages online. 

We hope you’ll share the film with your family, friends, and social media connections to promote better awareness about rare diseases like Primary Immunodeficiency. We hope you enjoy and learn something from our story! Together we can Do Something MORE.