President for Narcolepsy Australia, Melissa Jose, said hosting the first patient conference presented a significant opportunity to connect people living with narcolepsy and bring together information and resources that many could not easily access.
"Narcolepsy impacts the mental and physical abilities of its sufferers, with symptoincluding recurrent and often daily sleep attacks and cataplexy attacks (complete loss of muscle tone and collapse), hallucinations, sleep paralysis and inability to function unaided in daily life," Jose said.
"The conference will enable people living with Narcolepsy to connect with each other and learn about new treatment options and research advances, which may help change their quality of life.
"It's pretty significant as many sufferers have never met another person living with narcolepsy," Jose said.
Leading International Narcolepsy spokesperson and Founder of Project Sleep, Julie Flygare said it was great to see Australia's narcolepsy community working together and supporting the need for change. "Frontline treatments have improved the lives of so many in the United States but are little known in Australia. It's time to change that, as our Australian friends deserve the same opportunities to succeed with the best care available," Flygare said.
Professor for Stanford University Centre for Narcolepsy, Dr Emmanuel Mignot will share information about treatment options, including the use of Xyrem in the treatment of Narcolepsy.
"Xyrem unquestionably represents the single largest opportunity for Australian Narcolepsy sufferers to achieve a better quality of life and we hope to educate patients and Sleep professionals about its advantages," Jose said.
"Xyrem is used as a first line treatment option for Narcolepsy in the USA and while the medication has not yet been registered in Australia, it can be accessed through the Therapeutic Good Administration Special Access Scheme.
"As there is no cure for Narcolepsy, we are keen to learn as much as we can from the world's leading Narcolepsy expert and do what we can to support the registration of Xyrem in Australia," Jose said.
Sponsored by Nova Employment, the inaugural patient conference will feature keynote presentations from internationally renowned Narcolepsy expert Dr Emmanuel Mignot, MD, PhD, Narcolepsy advocate Julie Flygare, who are travelling from the USA to attend along with guest speakers Ray Jeffrey, Director, NDIS Queensland, Joel Coughlan, Naturopath, Helen Trenerry, Director, Queensland Medicine Advisory & Information Service, Dr. David Cunnington, Director, Melbourne Sleep Disorders and Simone Silberberg, Psychologist.
