Hands Across Australia 2015 Gallery

Amy Mills

I have a Rare Disease called Cystic Fibrosis. This photo was taken during a physiotherapy session I have to do daily to keep me alive! I strongly support Rare Disease Day 2015!

Hanna Hetherington &
Doug Schofield

We support Rare Voices Australia and all the work they do toward making Rare DiseasesDay 2015 count.

Stephen Thorpe

I support Rare Disease Day 2015!

Ben Keast

I support Rare Disease Day 2015

Louise Walker &
Justin Micallef

We support Rare Disease Day 2015

Mitch Nusco &
Alex Tarsisi

We support Rare Disease Day 2015

Jacqueline Laing

I support Rare Disease Day 2015

Carmelo Dablio, Simon Georges, Sophie Kilitiki, Elias Francis,
Cindy Tang & Christine Camilleri

We support Rare Disease Day 2015

Vimmi Kakkar, Anthony Hashim,
Sang Ngo, Mary Nguyen, Vandita Bakshi, Gabrial Fong, & Nikika Jain

We support Rare Disease Day 2015

Zico Truong &
Hussein Abbas

We support Rare Disease Day 2015

Michelle Buddhipala

I support Rare Disease Day 2015

Michael Mullane

Isupport Rare Disease Day 2015

Stacey Lu

I support Rare Disease Day 2015

Thanks for your Support

Rare Disease Day 2015

Helen Harvey

I support Rare Disease Day 2015

Ike Mason

I support Rare Disease Day 2015

Lorisse Bazley

I support Rare Disease Day 2015

Thanks for your Support

Rare Disease Day 2015

Thanks for your Support

Rare Disease Day 2015

Barbara Mills

My daughter suffers from a rare disease and I put my hand up in support of Rare Disease Day 2015.

Fay Howard

I was diagnosed with Acromegaly.  I support Rare Disease Day 2015

Cameron Mills

I am 5 years old and myy big sister has a Rare Disease.  I want to help her get better!

Thanks for your Support

Rare Disease Day 2015

Thanks for your Support

Rare Disease Day 2015

Research scientists from Wicking Lab at The University of Queensland's Institute for Molecular Bioscience

"Our goal is to provide families living with rare diseases choices in the shorter term and hope for the future." - Associate Professor Carol Wicking

Jordan, Logan & Dylan Weir

2 of only 3 children in the world born with
X-Linked Chronic Intestinal Pseudo Obstruction, brothers Jordan and Logan, can't eat or drink and rely on an Intravenous solution called Parenteral Nutrition.

Research scientists from Koopman Lab at The University of Queensland's Institute for Molecular Bioscience

"Our group at The University of Queensland's Institute for Molecular Bioscience study how genes make us male or female. We also study how changes in gene structure and function can lead to variations from typical male or female biology, and to the many complications that can arise in these situations.   ---->

Research scientists from Koopman Lab at The University of Queensland's Institute for Molecular Bioscience

Through better understanding on a scientific level, we hope that our society and healthcare system can more adequately cater for those for whom sex and gender are not straightforward issues."
- Professor Peter Koopman .

Barbara Mills & Co-workers

We support Rare Disease Day 2015

Helen Kosmarikas and Jim Demetriou

Forever Brave represents the interests of citizens in Australia affected by Haemoglobinopathies, as carriers, as patients, family member, carer, colleague or medical professional. The key role of FB is to provide community education & awareness, information on Thalassaemia, Sickle Cell & related Haemoglobinopathies, Prenatal screening & patient advocacy.

Dr Harriet Lo, Professor Rob Parton, Dr Tom Hall, and Mr Wheen Lim from University of Queensland's Institute of Molecular Bioscience

Our research team is working to understand how the cells that make up the tissues of our bodies function at the molecular level. 
Only when we fully understand how disease changes our bodies can we start to develop effective treatments.

Jessica Betterridge

I was diagnosed with the rare metabolic disease, Hereditary Coproporphyria in 2014. In between regular hospital admissions which often have life threatening complications, I have managed to complete and will be graduating with a degree in Architecture THIS WEEK!!!!

Jake Stevenson

In September 2012, Jake was diagnosed with a rare skin disorder called Pityriasis Rubra Pilaris (we like to call it PRP! )

David Napier

I have an "undiagnosed" autoimmune disease that is attacking the central nervous system and is progressive and incurable.  Even the best in the land are stumped.  I'm still climbing the mountain.

John, Sophia and Paige Moore

This is our family.
Sophia is 5 and has classic PKU

Lilly Boon

This is Lilly. She is 8 years old and has 22q11 deletion syndrome. She had open heart surgery at 13 days old for a complex heart condition called Truncus Arteriosus. She is my rare and beautiful grand daughter.

Kahlani, Malia & Elena

It's hard to tell our 2 oldest daughters have a rare blood disease. HAE (Hereditary Angioedema) causes swelling externally and internally, and potentially life threatening if the airways swell shut) but we are determined to help them lead happy, fulfilling lives. Their youngest sister always helps look after them when they aren't well and wants to be a doctor when she grows up.

Jenny Sturrock

Jenny Sturrock has a rare disease called PNH. She wants to see a National Plan for Rare Diseases implemented in Australia! 

Madison Nissen

Madison was diagnosed with Addison's Disease in 2013 at the age of 10.  
Madison and her Mum Kerrie support
Rare Disease Day 2015

RVA's Industry Round Table of Companies

"We support those who live with
a Rare Disease".
Cameron Milliner (Shire), Megan Fookes (RVA), Rebecca Novacek (RVA),

Tracey McDonnell (A.Menarini),
Nnamdi Udehku (Genzyme), Claudia Optiz (Genzyme), Kathryn Evans (BioMarin), Shirley Lo (BioMarin)

Genzyme, a Sanofi Company - Rare Diseases Team

"We support Rare Diseases Day 2015!"
Sue Stone, Shelley Evans, 
KeeWoon Bong, Zoe Pavy

Genzyme, A Sanofi Company - Rare Diseases Team

"We support Rare Diseases Day 2015!"
Andre Turenne, Nnamdi Udechuku,
Liz Baker, Katerina Galluzzo

The Ogilvy PR Health Team

"We support Handprints Across Australia
for Rare Disease Day 2015"

Amelie Bauman

Amélie was diagnosed with Smith-Magenis Syndrome at the age of 3. Despite facing chronic sleep disturbance, sensory processing challenges and learning difficulties; Amélie resiliently embraces
life with enthusiasm, a fantastic sense of humour and with great affection for those around her. Please visit http://www.prisms.org/ and the Prisms Smith-Magenis page for more information.

Gabriella Coward

Thanks for supporting
Rare Disease Day 2015

Stu Fillman & Anthony Earp

Genzyme RD Medical
"We support Rare Diseases Day.
What a great initiative!"

Julie Crisp

The Northern Territory Auditor-General's Office supports Rare Disease Day, 28 February 2015

Anne Cutler

AWCH is participating in Rare Disease Day. Everyday this week we will be posting photos of calico dolls designed by children in keeping with the theme #daybyday, #handinhand.

Sarah King

Hi I'm Sarah, I have several rare diseases. I have Cowdens Syndrome, Intracranial Hypertension, Spina Bifida Occulta, and MODY, a form of Type 1 Diabetes. I'm a one of a kind :).
Taking it one day at a time.

Chris Daws

Hi. I have had Mal de Debarquement Sydrome for just over 2 years. MdDS is a persistent and long lasting disorder of perceived motion and related imbalance that most often develops after a cruise. It is a poorly understood neurological condition, and there is currently no cure.
MdDS Australia is a group offering support and helping to raise awareness.  mddsaussies@yahoo.com.au 

Belinda Delacour-Batch,
with daughters Kenzie,Ryleigh and husband Chris.

I have Pompe Disease (muscle wasting disease). I whole heartedly support Rare disease day, the more recognition for the unheard of the better. My Journey spans over 10 years and everyday the light at the end of the tunnel is getting brighter because of the hard work and loud voices of many generous people. If we speak loud enough people will listen. Raise your voice for RARE DISEASE DAY, lets get it out there so people understand.

Maureen Jarrott

3 years ago I went on a 7 night cruise after alighting the ship I had difficulty walking and still felt like I was moving constantly. I was diagnosed with mdds..mal de debarquement syndrome. My life has changed completely I am sea sick 24/7. I would like to raise awareness of this condition. 

Corey Cook

Corey is nearly 20 and was born at 28 weeks, at 660 grams. He has Goldenhar syndrome]

Catherine & Tarryn

We both suffer from the rare Pompe Disease, along with 34 known Australians. We receive  fortnightly infusions of Myozyme treatment via the drug company's compassionate access scheme.

Anna Zukancic

I was diagnosed with MPS1 three years ago and now have weekly enzyme replacement therapy in hospital. 

Jacqueline Hodson

I was diagnosed with Cystic Fibrosis at 1 day old. Everyday I take up to 40 tablets, spend over an hour treating my lungs and every few months I see my specialist for tests and needles, occasionally being admitted. Some days I wake up with a tight chest and struggle to breath, but I've lived with CF for 23 years and I wouldn't change a thing. Living with CF has taught me to appreciate life and all it offers. It has helped me to treat each and every day as a blessing and to always keep smiling! 

Alexion Pharmaceuticals Australasia

The staff at Alexion support Rare Diseases Day 2015.

Alexion Pharmaceuticals Australasia

The staff at Alexion support Rare Diseases Day 2015.

Supporting Rare Disease Day

Yum!  Good on you!

The Team at Shire ....

Thank you Shire for your support.

support Rare Diseases Day

Thanks Team Shire!

Jo Morel 

I have MoyaMoya Disease and have had brain surgery in 2006 and 2009. This disease also effects children. Moya Moya is a restriction of blood flow to the brain, our vessels look like thin hairs instead of the consistency of a cooked thin spaghetti. The word Moyamoya means "puff of smoke" in Japanese, as this is what our brain scans look like.

Jo Pittwood

I have Moyamoya disease. It is a progressive cerebrovascular disease that cause stenosis of the carotid arteries until they are totally occluded. There is no cure, just surgical procedures to reduce the incidence of strokes.I was diagnosed 29 years of age.I have had multiple strokes but surgical intervention hasn't worked out for me as I also had an arteriovenous fistula. Spreading awareness for Moyamoya disease! 

Claudia Doughty

"Share the Love - Claudies Cause" Claudie is 10 years old today. Our little princess was diagnosed with CDG1e - Congenital Disorder of Glycosylation Type 1e January 2015. Claudie is the only one in Australia diagnosed with this so far... Approximately 8 people world wide.

Claudia's Supporters

Pictured:  
Simone, Neil & Claudia Doughty (left)
Nana (Pauline Schwabe), Katherine, Xavier, Tash & Ivanah (right).
Showing support for those with CDG1e - Congenital Disorder of Glycosylation Type 1e.

Zeke Harrison

Born with a rare metabolic condtion called Maple Syrup Urine Disease. He was hospitalised many times and at age 2 was placed on the liver transplant list. Zeke was transplanted 12months ago at the age of 3 and was the first Australian with MSUD to receive a transplant. He creates awareness and support for others with the rare condition through his event 'Zeke's Fundraiser'.

Dr. Gareth Baynam

Gareth is a Clinical Geneticist, at Genetic Services of Western Australia.  
"We support Rare Disease Day, 2015"

Professor Hugh Dawkins

Office of Population and Health Genomics, WA

"We support Rare Disease Day, 2015" 

Dobroyd Point Public School

Kindergarten, Year 1 and Year 2 students helped raise awareness for Rare Diseases Day 2015 by having a special Beach Day at school. They wanted to show support for Year 1 student Madison Cobb who lives with a range of rare diseases.

Madison Cobb - Year 1
(centre)

Madison's strength and happiness is admired by us all. She inspires us daily through demonstrating resilence, courage and positivity.

Nerida Bodycote - Madison's Mum, spoke to Dobroyd Point Public School

Nerida talked to the children about what 'rare' and what 'diseases' mean.  The children asked some very interesting  and relevant questions.
Thank you Dobroyd Point Public School for supporting Rare Disease Day 2015!

The Pfizer Team celebrate Rare Disease Day 2015

Thank you for your support.

"Hand-in-Hand, Day-by-Day"

A Handprint collage from staff to commemorate Rare Disease Day 2015.

Rare Disease Day 2015

Thanks for your support!