- Last Updated on 15 April 2016
Every April 17, World Haemophilia Day is recognised worldwide to increase awareness of haemophilia and other inherited bleeding disorders.
Globally 1 in 1000 people has a bleeding disorder.
Most are not diagnosed and do not receive treatment
With increased awareness comes better diagnosis and access to care for the millions who remain without treatment.
World Haemophilia Day was started in 1989 by the World Federation of Hemophilia (WFH) which chose to bring the community together on April 17 in honour of WFH founder Frank Schnabel’s birthday.
In 2016 HFA will celebrate World Haemophilia Day to support the WFH goal of Treatment for All.
In people with bleeding disorders, the clotting process doesn’t work properly. As a result, people with bleeding disorders can bleed for longer than normal, and some may experience spontaneous bleeding into joints, muscles, or other parts of their bodies.
Hemophilia is a bleeding disorder that affects approximately 1 in 10,000 people. People with hemophilia do not have enough clotting factor VIII (hemophilia A) or IX (hemophilia B) in their blood which inhibits the clotting process.
The most common bleeding disorder is von Willebrand disease (VWD) which is generally less severe than other bleeding disorders. Many people with VWD may not know that they have the disorder because their bleeding symptoms are very mild.
Rare clotting factor deficiencies are disorders in which one of several clotting factors is missing or not working properly. Less is known about these disorders because they are diagnosed so rarely. In fact, many have only been discovered in the last 40 years.
Finally, inherited platelet disorders are conditions in which platelets don’t work the way they should, resulting in a tendency to bleed or bruise.
Light it Up Red!
Once again, landmarks and monuments around the world will support World Haemophilia Day by changing their lighting red on April 17. In Australia AAMI Park, Melbourne and the Perth Bell Tower will go red in support of World Haemophilia Day.
Find out More: WFH World Hemophilia Day page: www.wfh.org/whd/ →
- Last Updated on 10 October 2015
Haemophilia Awareness Week is an opportunity for individuals and families as well as Haemophilia Foundations and other organisations to take part in a campaign to raise funds and awareness about haemophilia, von Willebrand disorder and other bleeding disorders during the week of 11-17 October 2015.
For more information on Haemophilia Awareness Week and Red Cake Day:
- Last Updated on 29 September 2015
Leukaemia Foundation - Light the Night walks take place across the country on Friday October 9.
Each one is an inspiring event where we light lanterns and raise funds to walk in aid of Australian families affected by leukaemia, lymphoma, myeloma and related blood disorders.
Light a gold lantern to remember a loved one, white for your own journey, or blue to show you care.
The money you raise will fund research and support, and your presence will lift many hearts as we walk in hope for a future free of blood cancer.
Find out More: http://lightthenight.org.au/
- Last Updated on 16 August 2015
Treating Cancer: Dr Kylie Mason comments on the new approaches to treating cancers such as leukaemia and non-hodgkins lymphoma ahead of National Science Week 2015
This article appeared in the The Age, August 16, 2015
Author: Science Writer, Bridie Smith
Ask a medical researcher if we will ever find a cure for cancer and the answer will likely come cushioned with a gentle smile and shake of the tilted head before it's verbalised - no.
"It's an infinite number of diseases, it's not just one disease," says leukaemia researcher and scientist at the Royal Melbourne Hospital and Melbourne University Kylie Mason. "The more we know the more we realise what we don't know."
Progress, helped by advances in everything from supercomputing to immunotherapy and genomics, is nevertheless being made.
In Dr Mason's field alone, researchers have gone from believing that there were just two kinds of non-Hodgkin lymphoma to having identified more than 60 types. And that's not including the subtypes that have been documented.
According to the Cancer Council, the five-year survival rate for all cancers has improved from 47 per cent between 1982-87 to 67 per cent in 2007-11.
And there is more improvement to come, thanks to the advent of what is called personalised medicine which tailors treatment to the individual's profile, not the cancer.
"Every patient is an individual," said Dr Mason, who herself survived leukaemia as a teenager. "They are going to respond differently to somebody else with the same named diagnosis. We're not treating a cancer, we're treating a patient."
Read the full article: The Age
The New Frontier in Treating Cancer,16 August 2015
Dr Kylie Mason, MBBS PhD FRACP FRCPA is also a Clinical and Laboratory Haematologist at Melbourne Haematology.