29 Feb: World Rare Disease Day

World Rare Disease Day is to raise awareness about rare diseases and their impact on patients’ lives. As a ‘rare’ day, 29 February 2012 marks the 5th World Rare Disease Day. Rare Disease Day seeks to bring about positive change to benefit people with rare diseases, which in Australia is defined as one that affects […]

Registry reaches 1000!

Amazing support helps improve our understanding of genetic heart disease in Australia The latest enrolment on the National Genetic Heart Disease Registry has taken us to the 1000 mark! This huge achievement is thanks to the collaborative efforts of key centres across Australia and the involvement of Australian families affected by genetic heart disease who […]

Ball raises money for Young Hearts

The Keep Young Hearts Beating ball raised over $47,000 for genetic heart disease research. Following the tragic death of a much-loved husband and father of two young children, Anton, friends rallied together to form the Keep Young Hearts Beating committee to help make a difference. Anton died unexpectedly from a genetic heart condition known as […]

Season’s Greetings!

Merry Christmas and Happy New Year from the Registry team! On behalf of all the Registry research team, we wish everyone a very Merry Christmas and Happy New Year!! We hope you have a great break and look forward to an exciting 2012. 2011 has been an amazing year for the National Genetic Heart Disease […]

Generous Splash for SIDS Research

The Splash of Red Foundation funds $25,000 scholarship to examine genetic factors in SIDS. COMMUNITY GROUP BEHIND NEW GENETIC RESEARCH INTO SIDS The Splash of Red Foundation has given genetic research into SIDS a huge boost by awarding a research scholarship of $25,000 to young Centenary Institute scientist Annie Evans. The scholarship, the second awarded […]

Registry Key To Understanding

Registry information is producing award-winning research and unique insight into genetic heart disease in Australia, writes National Coordinator Jodie Ingles. With more than 1000 people now enrolled on the National Genetic Heart Disease Registry, I’m excited about the progress that has been made over the past four years to establish the first registry of its […]