New Registry coordinator at Melbourne’s RCH

Vanessa Connell from the Royal Children’s Hospital (RCH) in Melbourne has joined us as the RCH’s new Australian Genetic Heart Disease Registry Coordinator. Vanessa is excited about working on the Registry and working with RCH families to help improve our understanding and care of genetic heart disease in Australia. “While working with children and families […]

Cardiomyopathy seminar in Brisbane

The Cardiomyopathy Association of Australia (CMAA) has an interesting line up of leading specialists to talk at their 2012 seminar in September. Cardiomyopathy – A Moving Picture 2012 Seminar will highlight recent developments and the latest research in the diagnosis, treatment and after care of people with cardiomyopathy. Professor Chris Semsarian, Dr Jodie Ingles and […]

Cuppa for HeartKids

In August and September make your cuppa count by raising funds for HeartKids Australia. During August and September 2012 HeartKids will be running their Cuppa for HeartKids campaign where people and businesses are encouraged to host a tea party and raise funds for childhood heart disease (CHD). HeartKids are a great organisation that improves the […]

HeartKids grant for gene research into sudden death in children and babies

Childhood heart disease (CHD) is one of the leading causes of infant death in Australia. Every week more than four young Australians die from CHD. Investigating the role of potentially deadly genetic heart diseases play in these heart-breaking losses will receive a boost for one research team in Sydney. The $29,000 HeartKids grant will be […]

Q&A: caffeine and heart disease

Prof Chris answers a query about caffeine for people with or at-risk of genetic heart disease. Question: As part of the dietary limitations on a person suffering from a SAD’s, what is the recommended limit of stimulants such as caffeine? Kathy C Answer from Professor Chris Semsarian: High levels of caffeine can have negative effects […]

Sydneysiders: learn more about ICDs at group meeting

Find out more about ICDs with cardiologist Dr David Whalley when he talks on Thurs 26 July at the next ICD Group Meeting at Royal North Shore Hospital (RNSH). RNSH cardiologist Dr David Whalley will give you an interesting overview of implantable cardioverter defibrillators (ICDs), how they work and how technology has progressed over the past 30 years. […]

Open your heart for HeartKids in February

Every day, 6 babies are born with Childhood Heart Disease (CHD). Learn more about CHD today February is HeartKids Awareness Month & Valentine’s Day (14 Feb) is HeartKids Awareness Day! HeartKids is trying to raise awareness and funds in Australia about Childhood Heart Disease (CHD), which is one of the biggest killers of children under the […]

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 […]

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 […]