1. Mar, 2017

4 Years Advocating, Educating and Raising Awareness of Idiopathic Hypersomnia

HYPERSOMNOLENCE AUSTRALIA CELEBRATES 4 YEARS AS A NOT FOR PROFIT HEALTH PROMOTION CHARITY 

New directions and exciting partnerships….

We have learnt a lot about Idiopathic Hypersomnia and about sleep medicine in general since Hypersomnolence Australia was officially launched in March 2013. We have learnt that sleep medicine is a fairly young medical specialty in not only Australia but the rest of the world too. When we first started Hypersomnolence Australia we were surprised to learn that sleep training for GP's was almost non existent. We were even more surprised to learn that there were too few specialty training posts for doctors in Australia that could provide broad exposure to and quality training in, the whole range of sleep disorders, particularly non-respiratory sleep disorders. We have also found this to be the case in other parts of the world too. It has certainly explained why there was a lack of awareness and quality information available about Idiopathic Hypersomnia and why there were no support services available to patients, no research being done (in Australia) and no approved medications (anywhere in the world).

While there are organisations that represent sleep health and others that represent specific sleep disorders there were no organisations anywhere in the world that catered specifically to Idiopathic Hypersomnia. When patients were diagnosed there was nowhere for them to go for information so that they could better understand the condition and the implications it has on quality of life. There was nowhere for them to direct family and friends to either which made explaining it to others very difficult.

At the beginning of 2013 we set out to change that by setting up the world’s first Not for Profit organisation dedicated to Idiopathic Hypersomnia. Hypersomnolence Australia was registered as a Health Promotion Charity in March that year. We are still the only Not for Profit health promotion charity dedicated to Idiopathic Hypersomnia in Australia but we are pleased to say that there are now other organisations, the Hypersomnia Foundation and Atlanta Hypersomnia Support in the US on board with us raising awareness and providing support and information for Hypersomnia.

We shared this post last year on our 3rd anniversary so the direction is not so much new to us however it might be new to others that are unaware of Hypersomnolence Australia’s goals and purpose. 

We will continue to move in the direction mentioned in that post and look forward to working with Sleep Disorders Australia on joint projects that see both organisations reach common goals.