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
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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