AGSA
AGSA is a network of people who are affected by genetic conditions, either directly or indirectly. Our job here is to make sure that you have someone to talk to, and you have other places and people we can put you in contact with to make your journey a little easier.
We have built up a contact register with over 850 genetic conditions plus 250 rare chromosome abnormalities and details of support groups, and we are meeting new people every week who are starting their own new connections.
Please contact us during the week on 02 9211 1462, or use our contact form here.
February 29, 2012 marks the fifth international Rare Disease Day coordinated by EURORDIS and organised with rare disease national alliances in 25 European countries. On this day hundreds of organisations, support groups, patients and families, from more than 40 countries worldwide are participating in awareness-raising activities around the slogan “Solidarity”
“Rare but strong together”
One such event will be held in Martin Place.
Where:
Martin Place amphitheatre (nearest cross street is Castlereagh Street).
When:
February 29 2012
Why:
Although by definition each rare disease occurs infrequently, collectively, approximately 8000 rare diseases affect approximately 6-10% of the population. This is equivalent to 30 million people in Europe, 25 million people in the US and 1.2 million.
How:
Volunteers will be on hand from 7am on February 29 to distribute information on rare disease and free coffee to people on their way to work. From 12 noon until 2pm Martin Place will play host to dancers, face painters, singers and craft activities to draw attention to Rare Disease Day and provide some fun for individuals and families affected by rare disease.
If you wish to be involved contact AGSA or just come along at 12 noon Martin Place.
***Details are still being finalized so please check this site
for updates before setting off on the day ****
Ryde Area Supported Accomodation (RASAID) in the news
From Northern District Times:
"NORTHERN district parents who care for a disabled adult child popped champagne corks last week after seven years of riding a “rollercoaster of hope and despair”.
Ageing members of the Ryde Area Supported Accommodation for Intellectually Disabled (RASAID) were worried about who would look after their child once they died.
But now their wish for suitable supported accommodation for their children has been granted."
Full Story: http://northern-district-times.whereilive.com.au/news/story/welcome-home-funding/
Friendly to the Extreme:
Meet Kids and Adults With Williams Syndrome
From ABC News:
"Williams Syndrome is a rare genetic condition -- so rare, in fact, that few people have ever heard of it. Of about 7,500 newborns, only one will have it. But that one, should you ever meet him or her, will likely have a personality of unforgettable ebullience and warmth. It is the type of personality seen only occasionally beyond the world of Williams Syndrome."
Full Story: http://abcnews.go.com/Health/friendly-extreme-meet-kids-adults-williams-syndrome/story?id=13795416
Learn more about AGSA, Genetic Conditions, or make an enquiry:
66 Albion Street, Surry Hills
New South Wales, Australia, 2010
+ Click for Google Map
Telephone: +61 2 9211 1462 Fax: +61 2 9211 8077
Reg Charity No. CFN: 15481
ABN: 83 594 113 193
Funded by NSW Health
Melissa Parke MP, Federal Member for Freemantle, talks about legislation affecting patents and human genes:
|
|
