The Australasian Tuberous Sclerosis Society

29th of February is a rare day. It is also 2012 International Rare Disease Day!

There are events on around Australia. More details.

What will you do to mark this year's International Rare Disease Day?

Over 80 people, from every state and territory, attended the 2011 ATSS family conference on 8th and 9th of October in Sydney.
On top of that, approximately 40 medical professionals attended the concurrent medical meeting.

We are still gathering the slides and waiting for the video footage. When these are available we will put together a conference summary book that you can order if you weren't able to make it to Sydney.

In the meant time, photos of the weekend are available here: http://www.flickr.com/photos/atss/sets/72157627757844533/

Attention TSC Families in QLD and in northern NSW: November 5 should be in your diaries. ATSS is collaborating with Epilepsy Action to host the Epilepsy: Top of Mind symposium in Brisbane. But even if you don't have epilepsy, or your epilepsy is under control, please join us.

The TSC stream includes the following talks:

• Genetics of TSC
• The importance of surveillence and monitoring
• Epilepsy treatment options specifically for TSC

And of course it is an opportunity to meet or re-connect with those affected by TSC in your area.

Clare Stuart and Deb Duffy will be there from the ATSS committee in Sydney as well as Tamara Goong, the ATSS regional co-ordinator in Brisbane. They'll also be able to what we all learnt in Sydney at the Family Conference.

All the details are here:

http://www.epilepsy.org.au/our-services/upcoming-events#ETOM

The 30th Annual General Meeting of the Australasian Tuberous Sclerosis Society will be held on Sunday, 21st August, 2011. The AGM is part of the annual seminar day.

The speakers at the seminar day are:

Dr Christopher Goon – Novartis Pharmaceuticals - The Drug Development Process

Chris will provide a summary of the complex process from drug discovery to prescription, including the basics of clinical trials and the TGA approval process.

Dr Orli Wargon – Dermatologist, Sydney Children’s Hospital - The Topical Rapamycin Cream Trial

Orli will outline plans for a clinical trial of a cream to treat angiofibromas and then host a question and answer session.

These two topics together will help TSC families understand why it takes so long for new treatments to reach them and what the ATSS-funded topical rapamycin clinical trial will achieve.

Date: Sunday 21st August, 2011

Time: 9 am – 3 pm

Venue: Lecture Theatre, Level 1, Sydney Children’s Hospital, High Street, Randwick

Registration Fee: $30 per person. This is a contribution towards lunch, morning & afternoon tea

Register online now.