Conference on rare diseases brings together patients, researchers

NOW: Conference on rare diseases brings together patients, researchers


The Boler-Parseghian Center for Rare & Neglected Diseases is holding a conference this weekend to connect survivors of rare diseases and researchers.

Former Syracuse football player Rob Long shares his journey with others to raise awareness of his rare disease.

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

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

"It was a grade 3, anaplastic astrocytoma. There are less than 20 occurrences every year. And most of those occurrences are in older men, into their 50s and 60s," Long said.

Now 29 and cancer free, Long relishes the chance to share his story of survival at conferences like the one being held this weekend at Notre Dame.

"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. Kasturi Haldar, the director of the center.

To inform, to educate and to bring hope to those with rare diseases.

"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," Long said.

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