Pennsylvania doctor inspired to find treatments for rare diseases after almost dying himself

Philadelphia — A University of Pennsylvania doctor who found a treatment for his own deadly disease is now on a mission to help more people living with rare diseases.

Dr. David Fajgenbaum is the director of the Center for Cytokine Storm Treatment & Laboratory. He and his team are researching ways to use already existing drugs to treat more diseases.

His catalyst for this work is his own story. Fajgenbaum has Castleman Disease, a rare disease that attacks vital organs. He was told more than once it a was death sentence.

“The way I look at is, I’m not supposed to be here and I don’t know how long I will be, but as long as I am, I am on a mission to make sure that we find as many of these hidden cures and unlock them to save lives,” said Fajgenbaum.
When Fajgenbaum began researching cures to his own disease in 2010, he found it could be treated with an already existing FDA-approved drug. It saved his life.

Now, he has a nonprofit called “Every Cure” where he and his team are unlocking treatments for more rare diseases.
“Oftentimes a drug is developed for a disease, and there aren’t always incentives to figure out all the other diseases those drugs could be used for,” he said.

The idea behind Fajgenbaum’s research starts with what’s inside a drug store. There are 3,000 approved medicines in the world. The goal of Every Cure is to use these medicines to treat more diseases.

“There are 9,000 more diseases that have no approved treatment. So, we’re on a mission to unlock the full potential of the 3,000 drugs to treat more of those 9,000 diseases that don’t have any treatment,” he said.

Fajgenbaum is still chasing his own cure.

To learn more about Rare Disease Day, which was Feb. 28, visit