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  HANDS ACROSS AUSTRALIA 2016 GALLERY

Browse our gallery of Rare Diseases Day supporters below. You can take part by following the instructions here.

Rebecca Novacek

Hi, I'm the National Operations Manager for Rare Voices Australia. Help us to raise awareness of Rare Diseases by supporting Rare Disease Day on 29th February 2016

Support Rare Disease Day 2016

Join us in making the voice of
Rare Diseases heard.
http://www.rarediseaseday.org/country/au/australia

Nicole Millis

Supports Rare Disease Day 2016


Bella Gray
& the Sunshine Coast Cheerleading Team

Bella is 12 years old and is living with the rare disease - eosinophilic oesophagitis. Bella is a keen cheerleader and is pictured here with her supportive friends from Sunshine Coast Cheerleading.

Biomedical Researchers:
Ms Maria Rondon Galeano (left) & Associate Professor Carol Wicking (right), Institute for Molecular Bioscience,
The University of Queensland

“Our research is dedicated to uncovering the genetic causes of a class of rare diseases known as ciliopathies, enabling clinicians to provide better diagnosis and patient management. In the long term, we hope to use this knowledge to develop new therapies

Members of the Respiratory Team at Sydney Children's Hospital

The Respiratory Department at Sydney Children's Hospital, Randwick care for many children with rare lung conditions such as interstitial lung disease, congenital diaphragmatic hernias, tracheo-oesophageal fistula, congenital lung lesions, primary ciliary dyskinesia, cystic fibrosis and many more. We are proud supporters of Rare Disease Day.

       

Members of the Respiratory Team at Sydney Children's Hospital

We are proud supporters of Rare Disease Day

Association for the Wellbeing of Children in Healthcare (AWCH)

AWCH is a non-profit organisation advocating for the emotional and social needs of children and adolescents in the health care system. Our ‘Handprints Across Australia’ campaign involved the help of some creative children making calico dolls and our office volunteers decorating calico garden gloves.

Tama Matoka 

Tama has a rare genetic disorder called Smith Magenis Syndrome. SMS is a developmental disorder caused by a micro-deletion of genetic material from a specific region of chromosome 17 that affects many parts of the body, including mild to moderate intellectual disability, delayed speech and language skills, distinctive facial features, sleep disturbances, and behavioral problems.

The WARDA Team
(L-R), Edwina Rudy, Jenn Quick, Gareth Baynam, Linda Watson,
Alison Rowley

The Western Australian Register of Developmental Anomalies monitors congenital anomalies (birth defects) and cerebral palsy in WA assists healthcare planning, guides research and helps to investigate causes, prevention and management of developmental anomalies. Many congenital anomalies, and a significant proportion of cerebral palsy, are rare diseases. 
http://kemh.health.wa.gov.au/services/register_developmental_anomalies/

Mitchell

Mitchell is 11 years old and has Carney-Stratakis Dyad Syndrome. The condition is caused by a mutation in the SDHB gene which has put all our family at risk of hereditary paraganglioma. Hereditary paraganglioma occurs in approximately 1 in a million individuals, while Carney - Stratakis Dyad Syndrome is even rarer. Mitchell also has Autism and has ongoing health issues related to Noonan Syndrome

Ron Fleischer &
Maddison McPherson

Supporting Rare Disease Day 2016

Gavin Dietz and Torben Sko
(Life Letters) 

At Life Letters, we aim to educate the community about rare genetic diseases and help support those affected in any way by rare diseases. Happy Rare Disease Day!

Dr Jeffrey Sia
(Life Letters)

Dr Jeffrey Sia of Life Letters supports Rare Disease Day 2016

Emma Harrison

Supporting

Rare Disease Day 2016

 

The Sanofi-Genzyme Team

Supporting Rare Disease Day 2016

The Sanofi-Genzyme Team

Supporting Rare Disease Day 2016

29th February 2016