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Notre Dame hosts Rare and Neglected Disease Day Conference

The Bohler-Parseghian Center for Rare and Neglected Diseases hosted a day long conference Friday in an effort to connect survivors and researchers and share information.

Former Syracuse football player, Rob Long, was one of the survivors who attended the seminar.

“I was diagnosed just five days after my last regular season game my senior year,” said Long.

At just 21 years old, Long received news he had a large and rare malignant brain tumor.

“It was a grade three, anopolactic astrocytoma. There’s less than 20 occurrences every year. And most of those occurrences are in older men into their 50s and 60," said Long.

Now 29 and cancer free, Long relishes the chance to share his story of survival with fellow survivors and researches about rare diseases like his at conferences like the one being held at Notre Dame.

Dr. Kasturi Haldar is Director of Center.

“There’s a tremendous amount to learn from the patient community. So getting the patient community, the researchers and fellows and trainees is the best way to advance studies in rare diseases," said Dr. Haldar.

To inform, educate and  bring hope to those who heard the news Long did seven years ago.

“You know my family is forever grateful for those that did research and spent the money to fund the treatment. From being 22 with no cure to being told I wasn’t going to see my 25th birthday to being 29 has been special,” said Long.


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