Sleep Disorders Australia
Dear Hypersomnolence Australia supporters
I am pleased to announce my appointment as a director on the board of Sleep Disorders Australia (SDA). SDA was established in 1994, it is a voluntary Not for Profit organisation that provides information and offers assistance and support to people and their families who are living with sleep disorders throughout Australia.
This is a great opportunity for the Idiopathic Hypersomnia (IH) community. When HA began in 2012 I didn’t set out to establish the worlds first NFP organisation dedicated to IH, it was born out of necessity. None of the already established sleep organisations in Australia mentioned IH on their websites however despite this, like other people with IH I contacted them and found that they were either virtually inactive and/or unfortunately (as was the case with SDA) they didn’t cater to IH. One of the reasons for that was not a lot was known about IH. Also, knowing it was a rare disorder it was assumed that the numbers diagnosed in Australia were probably significantly low. I found this interesting because I was coming across more and more people diagnosed with IH in Australia. We started out raising awareness with the Living with Hypersomnia website but I realised something more official was required in Australia so I set up HA and it was formally registered with the ACNC in March 2013.
One of the first things I did was set up a patient registry of people diagnosed with IH in Australia. It now counts over 300 people. This is significant for a few reasons, primarily there is no other record kept in Australia of people diagnosed with IH. A representative from the Sleep Health Foundation recently assumed the number was “less than 100”. It’s fair to say this misperception (of low numbers) was probably responsible for the lack of support for IH prior to HA so thank you to all those that have completed our IH patient survey, your contribution has clearly made a difference. Read more about our Patient Registry.
HA has played a significant part in raising the profile of IH worldwide. My next step is to focus on advocacy. My role with SDA will enable me to achieve this much more effectively.
As the name suggests, SDA endeavours to support all sleep disorders in Australia. At present, there is information and links on their website for sleep apnea, RLS and insomnia and well as a link to HA's website for IH. We are working towards adding more information about other sleep disorders and we will be also be sharing posts on SDA's social media to reflect this.
If you haven’t already please show your support by liking SDA's Facebook page. A twitter account has also been set up, you can follow SDA at @SleepAust
Sleep disorders and the people that struggle to live with them need attention in Australia. I look forward to working with SDA to help us achieve our common goals.
Sleep Disorders Australia