News

Melbourne for 2014 World Congress

Fri, 16 Jul 2010 13:15:27 +1000

Buenos Aires, Thursday 15 July 2010

Haemophilia Foundation Australia is delighted to announce that the members of the World Federation of Hemophilia General Assembly today voted that Melbourne will be the host city for the 2014 World Hemophilia Congress.

The Congress will bring together delegates from around the world to take part in the program, which will cover medical, multidisciplinary and laboratory science issues, with topics of special interest for people with bleeding disorders, members of national haemophilia organisations and health professionals.

Our thanks to the HFA bid team - including members and their families - haemophilia health professional groups, Melbourne Convention Centre & Visitors Bureau, governments and industry who provided the enthusiastic and strong support which made the successful bid possible.

Hemophilia 2012 will be held in Paris.

New research section

Thu, 10 Jun 2010 10:54:49 +1000

A new section on research has been added to the web site:

Bleeding disorders > Research

It covers:

What research is for

Different types of research

Current research studies for people with bleeding disorders

Questions to ask if you are thinking of being involved

What to do if you have concerns about a research study.

The aim of this section is to give you some information about research studies into bleeding disorders and some tools to make informed decisions about being involved if you are interested.

We'd be interested in your feedback - email us at hfaust@haemophilia.org.au.

World Hepatitis Day

Wed, 19 May 2010 00:00:00 +1000

World Hepatitis Day is celebrated globally on 19 May 2010.

This is hepatitis….

For people with a bleeding disorder and hepatitis C, it’s another life challenge.

What is hepatitis C all about for people with bleeding disorders? If you are a young person or parent of a child with haemophilia or von Willebrand disorder, you might not be aware of why hepatitis C has been so important in the history of bleeding disorders in Australia.

On World Hepatitis Day we have the opportunity to learn more:

• Why most Australians with bleeding disorders now use recombinant treatment products – what happened in the past and how things are different now

• What the challenges are for people with bleeding disorders who live on with the consequences of acquiring hepatitis C from their treatment products

• Why clotting factor product safety remains a priority for the bleeding disorders community.

Learn more about hepatitis C and why it is relevant to the bleeding disorders community – What has hep C got to do with me?

Read the inspiring personal stories of people with bleeding disorders and hepatitis C – Hep C – my story [PDF, 950KB]

Global campaign

In 2010 the global theme is This is hepatitis…. The aim is to increase community understanding and awareness of hepatitis and generate action. The worldwide theme focuses on personal stories of people’s lived experience of hepatitis B and C.

In Australia the national focus is on hepatitis testing and management. There are also "Love Your Liver Lunches" with liver-friendly food – some aim to raise funds for hepatitis C research and awareness.

Contact your local Hepatitis Council for information about local activities and events like picnics, lunches, street stalls, concerts, art/photo competitions.

For more information:

World Hepatitis Day – www.worldhepatitisday.org

Australian campaign – see the Hepatitis Australia web site - www.hepatitisaustralia.com

World Haemophilia Day

Fri, 16 Apr 2010 17:21:11 +1000

The Many Faces of Bleeding Disorders: United together on World Haemophilia Day

Saturday 17 April 2010 is World Haemophilia Day. Many people have heard of haemophilia but what of other inherited bleeding disorders?

Bleeding disorders can affect both males and females

von Willebrand disorder is the most common bleeding disorder

Women who carry the haemophilia gene can also experience bleeding symptoms

Most people around the world with bleeding disorders do not have access to adequate diagnosis and treatment.

On World Haemophilia Day 2010, meet the many faces of bleeding disorders - united to achieve Treatment for All.

To show the different types and varied experiences of bleeding disorders around the world, the World Federation of Hemophilia (WFH) has created the Many Faces of Bleeding Disorders video podcast. What was it like to grow up as a girl with undiagnosed von Willebrand disorder? What is the impact of living with haemophilia and limited treatment options in some parts of the world? What can we do about it? Visit www.wfh.org/whd for more information and to view the video podcast. This WFH video was made possible with funding from Baxter Healthcare Corporation.

World Haemophilia Day is celebrated on 17 April, the birthday of WFH founder, Frank Schnabel, who died of AIDS in 1987 as a result of contaminated blood products. Like Frank Schnabel, many Australians with bleeding disorders acquired blood borne viruses such as hepatitis C and HIV from their treatment products before 1990. Today there is enough treatment product available in Australia to help prevent bleeding, pain and joint damage. Treatments are carefully regulated and monitored to make sure they are as safe as possible and the risk of new infections from blood products is extremely low. Haemophilia Foundation Australia (HFA) continues to take a strong and watchful interest in product accessibility and safety to ensure ongoing supplies of safe treatment products.

The Many Faces of Bleeding Disorders campaign is part of the WFH's continuing efforts to improve care for people with inherited bleeding disorders around the world. Each year haemophilia organizations around the world celebrate World Haemophilia Day to increase awareness of haemophilia and other bleeding disorders.

"On World Haemophilia Day 2010 we want to spread the message that most people around the world with bleeding disorders do not have access to adequate diagnosis and treatment,” says Gavin Finkelstein, HFA President. “HFA actively supports the work of WFH to achieve treatment for all, and encourages others to as well – through the Global Feast fundraising program, the WFH twinning program and work on other WFH programs and committees. HFA has put in a bid to hold the 2014 World Congress in Melbourne – the World Congress is an important way for WFH to generate funds for programs and services around the world, including treatment for all.”

“The goal of the World Federation of Hemophilia is that, one day, treatment will be available for all those with inherited bleeding disorders, regardless of where they live,” said Mark Skinner, WFH president. “Our vision of Treatment for All means expanding services beyond hemophilia, to those with von Willebrand disease, rare factor deficiencies, and inherited platelet disorders.” For more information about bleeding disorders, HFA’s work in Australia and internationally and how you can help, go to HFA’s web site – www.haemophilia.org.au.

HIV Futures 6 Report now available

Wed, 10 Mar 2010 17:32:18 +1000

The report from the HIV Futures 6 Survey is now available for downloading at: www.latrobe.edu.au/hiv-futures/ If you would like a print copy of the report, please contact:

HFA or your local Haemophilia Foundation

Your Haemophilia Social Worker/Counsellor

Phone HIV Futures on 1800 064 398

Or email hivfutures@latrobe.edu.au.

The HIV Futures 6 survey was completed by 1106 HIV positive Australians from all states and territories, including some people with bleeding disorders. It considered many aspects of people’s lives, including their health and treatments, services they used, their social world, home, work and financial situation. HIV Futures is an ongoing research study into all aspects of living with HIV in Australia. Results are an important means of highlighting the current needs of people living with HIV around Australia. The study is conducted by the Australian Research Centre in Sex, Health and Society (ARCSHS) at La Trobe University, Melbourne. Thanks to those who completed the survey and state/territory Haemophilia Foundations and Haemophilia Social Workers and Counsellors who supported the survey process.

World Congress abstracts deadline

Thu, 07 Jan 2010 12:14:29 +1000

Hemophilia 2010, the International Congress of the World Federation of Hemophilia, will be held in Buenos Aires, Argentina, from Saturday 10 July to Wednesday 14 July 2010. The deadline for abstracts is 15 January 2010. Registrations close on 14 May 2010.

The congress will bring together delegates from around the world to take part in a diverse and exciting program. Sessions cover medical, multidisciplinary and laboratory science issues, with topics of special interest for people with bleeding disorders, members of national haemophilia organisations and health professionals.

If you are interested in submitting an abstract, check the topics in the Medical and Multidisciplinary Program and consider what you may have to contribute.

For more information, visit the HFA World Congress page.

Haemophilia Foundation Research Fund

Thu, 10 Dec 2009 15:21:38 +1000

Grants are now available for medical, scientific or social research which will improve outcomes for people with haemophilia, von Willebrand disorder or related inherited bleeding disorders, and/or medically acquired blood borne viruses. A total amount of $15,000 is available for one or more projects to be undertaken over the next year.

Application form and conditions of funding are available here - HFRF

Closing Date 31 March 2010

Damon Courtenay Memorial Endowment Fund

Thu, 10 Dec 2009 15:19:55 +1000

Damon Courtenay Memorial Endowment Fund are now open - for information and application forms click here DCMEF

Applications close: 30 April 2010

Vision and Leadership Awards

Thu, 10 Dec 2009 15:17:51 +1000

The Vision and Leadership Awards are now open - for information and application forms click here v&l

Applications close: 31 March 2010

World AIDS Day

Tue, 01 Dec 2009 00:00:00 +1000

Globally World AIDS Day is celebrated on Tuesday 1 December. The theme for this year is: "Take action. No discrimination.".

It focusses on the need to understand the needs of people with HIV and support them to live a life free of discrimination. This reflects the feedback from Australians affected by HIV, including some members of the bleeding disorders community, that in 2009 stigma and discrimination continue to be major issues that impact on their everyday lives.

World AIDS Day gives an opportunity to pause and acknowledge the people with bleeding disorders and their partners and families around the world who were affected by the HIV/AIDS epidemic in the mid-1980s when HIV was found in some blood clotting treatment products.

In the early 1990s they also found their blood products had been affected by hepatitis C. Since then haemophilia treatment product safety has improved greatly and the risk of new infections from using human blood products is now thought to be extremely low.

In 1985 HIV testing and inactivation was introduced for Australian blood products. Children and previously untreated adults with haemophilia have been treated since the mid 1990s in Australia with recombinant treatment products which are genetically engineered and contain little or no human material.

In 2004 Australian governments agreed to fund sufficient supplies of these recombinant clotting factors for people with haemophilia of all ages. Haemophilia Foundation Australia held a Remembrance Service during the 15th Australian and New Zealand Haemophilia Conference in October to remember those in the bleeding disorders community who have died.

Throughout the world many people wear the HIV/AIDS Red Ribbon on World AIDS Day to declare support for HIV positive people and those who are affected by HIV/AIDS. It is a symbol to the memory of those who have died and support for those who live with HIV.

In 2009 our challenge is to put the symbol into action by finding ways we can strengthen our support to affected members and work towards a community free of discrimination.

For more information about World AIDS Day, go to www.worldaidsday.org.au, or contact your local HIV organisation or HFA.