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When
Start: May 13, 2015 at 6:30PM
Finish: May 13, 2015 at 9:00PM
(UTC+10:00) Canberra, Melbourne, Sydney
Register By
May 11, 2015 at 11:59PM
Location
Customs House
31 Alfred Street
Sydney, NSW, 2000
Contact
Rebecca Novacek
General Notes

The Forgotten Ones

Registrations for this event are now closed.
The Forgotten Ones
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Free Registration
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RARE VOICES AUSTRALIA PRESENTS:

 

THE FORGOTTEN ONES by Alexandrena Parker 

 

 

The Forgotten Ones photographic exhibition focuses on capturing young Australian individuals that live with a sibling born with a Rare Disease. The project seeks to celebrate and recognise the unspoken and often forgotten support that siblings provide to loved ones suffering.  The series showcases 16 portraits from 11 different Australian families, representing 10 different rare diseases.

 

Please register your interest to attend the Opening Launch of the Forgotten Ones exhibition, which is on Wednesday 13th May 2015, 6.30pm - 9.00pm.

 

The photographic exhibition is also open to the public on Thursday 14th May, between 10am and 2.00pm. 

 

For more information:  www.theforgottenones.com.au

 

 

 

Alexandrena Parker is one of Australia’s fastest emerging photographers and is well renowned for her extensive work with children’s fashion, editorial and advertising clients across the country. The Forgotten Ones project is very personal to Alex, as she also lives with a rare disease. Alex has two younger siblings and would like to celebrate and more importantly recognise their role within her family in supporting and coping with her turbulent health.  She has teamed up with Rare Voices Australia for "The Forgotten Ones" project to further generate change and to create awareness for people affected by rare diseases. 

 

The Ripple Affect of Rare Diseases 


A rare disease is any disorder or condition that is life-threatening or chronically debilitating disease which is statistically rare, with an estimated prevalence of 5 in 10,000 or of similarly low prevalence and high level of complexity that special combined efforts are needed to address the disorder or condition.


There are over 1.2 million people directly affected by a rare disease in Australia, however this statistic doesn't take into consideration the parents, siblings and extended family members who are also suffering and supporting in their own unique way. 

Whilst rare diseases are made up of small minority groups, collectively the 8000+ known named rare diseases are surprisingly common affecting an estimated 10 % of the Australian population. Through the exposure of The Forgotten Ones project, Alexandrena hopes to demonstrate that rare disease communities extend beyond that of the rare disease sufferer. 

Naturally, extra care physically, emotionally and financially is usually required for a child living with a rare disease and this often means siblings are required to go without or make do with adverse circumstances. Conversely siblings also develop a great sense of compassion, responsibility and maturity though the exposure of living with someone who is suffering. The Forgotten Ones project seeks to both recognise and celebrate the negative and positive affects that rare diseases have on individuals and family members. 

The Forgotten Ones projects sole purpose is to generate greater awareness for rare diseases in Australia.

Contact Us for Further Information

Name: Rebecca Novacek
Category: Events
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