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CoRDS Registry

Kawasaki Disease Foundation Australia has partnered with Sanford Coordination of Rare Diseases (CoRDS) Registry.

This is an international and Central registry of individuals of any age who have been diagnosed with a rare disease. It was primarily developed to meet an unmet need for patient registries worldwide.

If you or a family member has been diagnosed with KD, you can help researchers see the whole picture.

To enrol in the CoRDS registry, or for more information, visit www.sanfordresearch.org/cords


Links

There is currently a research study looking at Kawasaki disease based in Australia and involving many countries around the world. This study is being coordinated from Perth but involves families from all over Australia. The study is looking at what makes children who develop Kawasaki disease different, to try to understand what causes the condition in the first place. It is the largest study of its type in the world and hopefully will lead to better diagnosis, treatment and ultimately preventative measures, such as vaccines, for Kawasaki disease. For further information of this exciting research follow this link.

Kawasaki Disease Genetic Study Newsletter 1

Kawasaki Disease Genetic Study Newsletter 2

 

Kawasaki Disease Foundation Newsletter - April 2012 - Current and future KD research Click Here

Kawasaki Disease Foundation Newsletter - September 2013 Click Here

Kawasaki Disease Foundation Newsletter - December 2014 Click Here

Kawasaki Disease Foundation Newsletter - April 2015 Click Here

Kawasaki Disease Foundation Newsletter - December 2015 Click Here

Kawasaki Disease Foundation Newsletter - March 2016 Click Here


If you and your family are interested in participating in these studies or would like more information, please contact This e-mail address is being protected from spambots. You need JavaScript enabled to view it ( This e-mail address is being protected from spambots. You need JavaScript enabled to view it )

 

Other informational sites -
KD Foundation - www.kdfoundation.org (US) (KD Foundation pamphlet)

KD Foundation Newsletter Vol. 1 Issue 1 (Click Here)

KD Foundation Newsletter Vol. 1 Issue 2 (Click Here)

KD Foundation Newsletter Vol. 1 Issue 3 (Click Here)

KD Foundation Newsletter Vol. 1 Issue 4 (Click Here)

KD Foundation Newsletter Vol. 2 Issue 1 (Click Here)

KD Foundation Newsletter Vol. 2 Issue 2 (Click Here)

 

Hawaii

Facebook Page

 

Canada

Parent Awareness Group

This Canadian Parent awareness group which has been offering support for 10 years officially launched their Facebook page on March 1st 2015, in honour of Rare Disease Day - Facebook

Parent Awareness - Website www.Kdcanada.ca

For further information on KD in Canada - www.kdcanada.org

KD Canada Winter 2015 Newsletter - (Click Here)

 

Singapore

A new KD support group has also been formed in Singapore. Click here to read more about this group.

Facebook Page

 

UK

Support Group UK - http://www.kssg.org.uk/

Children's Heart Federation (UK) - www.chfed.org.uk

Publicity on Kawasaki Disease

 

Heartkids Victoria/Tasmania

Heart Kids - www.heartkids.org.au

http://www.myheart.org.au/ - A place for youth living with Childhood Heart Disease

The following publicity articles by parents and KD patients tell the story of KD from non-medical points of view and have been used to assist the Foundation with awareness

 

Fundraising Event, Warragul and Drouin Gazette- Newspaper Article

N.S.W Nomination for Pride of Australia

Fraser Coast Chronicle - Benjamin Wells

The following articles were published about our Information Session held at the Royal Children's Hospital in 2010.

Article on Cameron

Article on Jack

Article on Cody

Article on Anastasia

 

James Jesson is doing a Journalism and Public Relations Course at RMIT. He had Kawasaki Disease when he was 3. His story was published in Living Now in October 2011 and can be read here.

The Heartbreaking disease - Faye Triantafillopoulos shares her story in a Greek Newspaper Read here

Lilydale Leader - Stacey Kinsmore tells about her son Jake

The Standard - Stadium stompers climb for a cause close to home

The Advocate - Family builds support network for Kawasaki diagnosis

Bendigo Advertiser - Bringing smiles in the face of Kawasaki Disease

 

These articles are from overseas KD parents

 

Globe Article - Donna Collins, U.S. KD Foundation

Sunday Tribune - Mark Satiya President of the KD Foundation of South Africa

Recent KD stories from overseas

Baylee Littrell on surviving Kawasaki Disease - Click Here

 

The Dave Harris Project and the KDF on Extra! - Click here

 

 

Our medical advisor Dr. David Burgner has had a number of papers/studies published in medical journals but has also done the following publicity/awareness

 

Perth ACA - Dr. David Burgner

Hearld Sun - November 2011

 

Triple R Interview with Dr. David Burgner -

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ABC Radio Interview by Dr. Burgner - January 2016 - Click Here