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NMO Patient Knowledge Exchange Day brings patients, researchers and clinicians together
The fourth annual Neuromyelitis Optica (NMO) Patient Knowledge Exchange Day was held on Saturday, November 28, and brought patients, family members, friends, caregivers, students/trainees and the general public to UBC's Point Grey campus to meet, collaborate, and learn about the latest in research and treatment for NMO.
NMO is a rare but unpredictable immune disorder, and those affected by it can lose vision in one or both eyes (optic neuritis) and can experience numbness or weakness in their arms and legs (transverse myelitis).
Dr. Tony Traboulsee (pictured right), director of the NMO Clinic and Research Program at Vancouver Coastal Health Research Institute and the Djavad Mowafaghian Centre for Brain Health, and Dr. Rob Carruthers presented and answered questions during the day-long event. The event attracted over 130 participants from around the province and also from Oregon and Alberta.
Approximately 150 people in BC have been diagnosed with this rare autoimmune disease and most have been referred to the NMO Clinic and Research Program. The NMO Clinic and Research Program at Vancouver Coastal Health Research Institute and the Djavad Mowafaghian Centre for Brain Health is the only center in Canada dedicated to the treatment and investigation of NMO.
Often confused or conflated with Multiple Sclerosis, NMO is a distinct disease requiring its own specialized treatment.
Under the direction of Drs. Traboulsee and Carruthers, the NMO group aims to raise awareness, educate and disseminate information about the disorder to health care providers and the public. The program was established in 2009, and was made possible through generous donations from Dr. Susan Diamond and Rick Diamond and additional support from Annual BC NMO Walk/Run as well as the Guthy-Jackson Charitable Foundation.
“We understand there are significant functional, social and psychological impacts on NMO patients and their family and friends,” says Dr. Traboulsee. “While information about this disorder is limited, we hope that by bringing together patients, researchers, and clinicians, we can improve our shared understanding and move research and care forward.”
The NMO team collaborates with national and international researchers to expand this knowledge. With more research and more resources devoted to identifying better treatments, more patients in BC will experience a better quality of life.