Erasing the Stigma of Neurofibromatosis

Have you ever heard of a genetic condition called neurofibromatosis, also known as NF?
It’s one of the most common genetic disorders, affecting about 1 in 3000 people globally. NF causes different types of tumours to form in various parts of the body. Because so little is known about the condition, it’s often misdiagnosed, or not diagnosed at all.
UHN is home to the Elisabeth Raab Neurofibromatosis Clinic, the only adult NF clinic in Canada. We discuss the clinic and the exciting research happening in the field of NF. But, for many people living with the condition, the stigma is often as challenging as the illness.
Featuring:
Dr. Suganth Suppiah – Surgeon-scientist at UHN’s Krembil Brain Institute and Assistant Professor at the University of Toronto. Dr. Suppiah also leads the nerve surgery program at the Elisabeth Raab Neurofibromatosis Clinic, Canada’s only adult NF clinic, based at UHN.
Dr. Ryan Thomas – Family physician and Clinical Associate who works with patients at the Elisabeth Raab Neurofibromatosis Clinic. Dr. Thomas lives with neurofibromatosis himself.
Additional resources:
Canadian first: UHN Opens Multidisciplinary Clinic on Genetic Disorder
Elisabeth Raab Accelerator of Science to End Neurofibromatosis
Neurofibromatosis Ontario
Dr. Gelareh Zadeh’s lab – link to more info about the Elisabeth Raab Neurofibromatosis Clinic
Children’s Tumour Foundation

The Your Complex Brain production team is Heather Sherman, Jessica Schmidt, Dr. Amy Ma, Kim Perry, Alley Wilson, Sara Yuan, Meagan Anderi, Liz Chapman, and Lorna Gilfedder.
The Krembil Brain Institute, part of University Health Network, in Toronto, is home to one of the world's largest and most comprehensive teams of physicians and scientists uniquely working hand-in-hand to prevent and confront problems of the brain and spine, such as Parkinson's, Alzheimer's, epilepsy, stroke, spinal cord injury, chronic pain, brain cancer or concussion, in their lifetime. Through state-of-the-art patient care and advanced research, we are working relentlessly toward finding new treatments and cures.
Do you want to know more about the Krembil Brain Institute at UHN? Visit us at: uhn.ca/krembil
To get in touch, email us at [email protected] or message us on social media:
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Thanks for listening!