News

World Haemophilia Day

Tue, 17 Apr 2012 10:14:48 +1000

Wear RED on World Haemophilia Day and help to close the gap of care

An estimated 1 in 1,000 women and men has a bleeding disorder. However, 75% still receive very inadequate treatment or no treatment at all. What will it take to close the gap?

On World Haemophilia Day 2012 help us “Close the Gap” of care around the world. Together, we can work towards a day when treatment will be available for all globally.

On World Haemophilia Day we want to inspire people to help close the gap and to improve accessibility and quality of care so that Treatment for All becomes a reality.

Every year on April 17, World Haemophilia Day is celebrated around the world in order to increase awareness of haemophilia and other inherited bleeding disorders.

World Haemophilia Day was started in 1989 and the World Federation of Hemophilia (WFH) chose April 17 in honor of WFH founder Frank Schnabel, who was born on that day.

On April 17, help us spread the message to “Close the Gap” of care around the world.

Raise money to help WFH close the gap for international projects by Wearing Red on World Haemophilia Day, and donate online at https://www.haemophilia.org.au/donation or send your donation to HFA 1624 High St, Glen Iris VIC 3146. All donations will be redirected to the World Federation of Hemophilia.

Don’t forget to send in your photos wearing red – view our photo gallery

Vision & Leadership Awards

Wed, 21 Mar 2012 16:51:02 +1000

The Haemophilia Foundation Australia Vision and Leadership Awards 2012 funding round is now open.

What would make a difference in your life?

5 Awards of $2,000 each are available for applicants who have a bleeding disorder or who are affected by bleeding disorders in one of these categories:

• Young men and women aged 15-25
• Men or women aged 26 yrs and over

The Vision and Leadership Awards were developed by Haemophilia Foundation Australia (HFA) to enable people who are affected by a bleeding disorder to seek and achieve new goals in their lives. The Awards program is funded by sponsorship from Pfizer Australia.

Who can apply?
People affected by haemophilia, von Willebrand disorder and other rare inherited bleeding disorders of all ages living in Australia are eligible to apply. This is a chance for you to do something you have always wanted, but not had the financial capacity to achieve.

What is it for?
It might be for an education activity or special project to enhance your personal development or career, or to attend a conference or program to enhance or develop new skills for leadership and participation in the bleeding disorders community.

How to apply
Applications must be received by HFA by 20 May 2012 by email, post or fax to:

Haemophilia Foundation Australia
1624 High St, Glen Iris VIC 3146
F: 03 9885 1800
E: hfaust@haemophilia.org.au

Download a PDF of the application form or an editable MS Word application form below.

HFA youth web site workshop

Mon, 19 Mar 2012 14:52:09 +1000

The HFA Youth Working Group (YWG) has been working hard to introduce creative ways for young people with bleeding disorders to be involved with their community and connect with each other. The YWG has been formed as part of the HFA youth project to drive the development of a web-based communication tool and contribute to a youth strategy going into the future.

Youth Workshop
Some members of the HFA Youth Working Group (YWG) met in Melbourne for a weekend workshop in February 2012. Their job was to contribute ideas on how young people with bleeding disorders can communicate with each other and give feedback on what the web site should include and look like.

Ideas for the web site
During the weekend the young people brainstormed what should be covered in the web site and what sections it should include. They created mock-ups of web pages and their own artwork for the web site. They were required to think through how to manage tricky issues like talking about sensitive issues and moderation and asked to come up with strategies to reach other young people with bleeding disorders and take the project into the future.


YWG photos from the weekend workshop

Web site design
Zaac and Matt from Twenty4, the design group developing the web site, held a session to refine the group’s ideas for the web site and looked at what young people consider to make a web site attractive. It was a really interesting way of seeing what was important and helped clarify the group’s priorities.

The YWG were a great team to work with who came up with some very innovative ideas. We’re looking forward to the next step, which is to develop a beta version of the web site for community testing.

Interested?
If you are between the ages of 13-30 and interested in being a part of the YWG, it’s not too late. Contact Kate on 03 9885 7800 or kwalton@haemophilia.org.au

More information about the HFA Youth Project and Youth Working Group

Cycling champ tours downunder

Mon, 16 Jan 2012 16:14:23 +1000

Alex Dowsett, a UK cycling champion with severe haemophilia A, took time out from his busy schedule to meet with some young Australians with haemophilia and share his tips on managing haemophilia as a competition-level cyclist.

Alex, a 23-year-old from Essex, England, is in Adelaide to compete in the Tour Down Under, an international cycling race which started in Adelaide on Sunday 15 January 2012. On Friday Alex met with some young men with haemophilia, along with other representatives from the local bleeding disorders community, Haemophilia Foundation Australia and the Haemophilia Centre, and gave some fascinating insights into championship cycling with a bleeding disorder.

To an absorbed audience Alex described his diet, training regime, his equipment and how he prevents and manages bleeds during training and events. He talked about his aspirations to compete in the 2012 Olympics and how it would work if he were selected.

Alex has a keen interest in Australian wildlife – he is hoping to see a live kangaroo on his travels in Australia.

To keep up with Alex’s progress in the Tour Down Under, follow him on Twitter - http://twitter.com/alexdowsett , or check the race coverage for his team on the Team Sky race hub - http://www.teamsky.com/race-hub/0,27714,24270,00.html

Haemophilia Foundation Australia would like to extend our thanks to Alex Dowsett for making his time available to Australian community members and to Team Sky for their support.

New mild haemophilia booklet

Fri, 23 Dec 2011 12:24:28 +1000

HFA has released its new mild haemophilia booklet, which is a comprehensive guide to living with mild haemophilia.

It includes information on:

understanding mild haemophilia
how to recognise a bleed and what to do about it
diagnosis, genetic inheritance and planning a family
treatment and care
what you need to tell your doctor, your dentist and other health professionals
special issues for girls and women
information on living well, including support, sport and exercise, travel, work, school, friends and relationships.

Click here to download the booklet or download sections by topic.

You can also order a print copy of the booklet by contacting HFA on:

T: 03 9885 7800 Toll free 1800 807 173
F: 03 9885 1800
E: hfaust@haemophilia.org.au

Season's Greetings

Thu, 22 Dec 2011 17:58:47 +1000

The Council and Staff of Haemophilia Foundation Australia wish you a safe and happy festive season.

Thank you for your support during the year and we look forward to working together again in 2012.

The HFA office will be closed from Friday 23 December 2011 and will reopen on Monday 9 January 2012.

During that time if you have any queries or need to contact HFA, please note that messages left on the answering machine will be monitored. If you have an urgent matter, please contact Sharon Caris on 0410 419 914.

World AIDS Day

Thu, 01 Dec 2011 00:00:00 +1000

Every year World AIDS Day is celebrated on 1 December.

For the bleeding disorders community in Australia it is a day to remember the people in the bleeding disorders community who were affected by HIV when HIV was transmitted through some batches of clotting factor treatment product in the mid 1980s. As a result of this tragic episode, some people lost partners, family members, children, patients, colleagues and friends. Some people continue to live with the challenges of HIV and some to inspire by their positive attitude and determination to build a better future.

In 2011 the World AIDS Day theme is “HIV is still here”. The aim is to encourage all Australians to be aware that HIV still exists in the community; to take action to reduce the transmission of HIV by promoting safe sex practices; and to accept and support individuals living with or affected by HIV.

World AIDS Day highlights the role of HIV positive people in strengthening community spirit. It shows how important it is for people living with HIV to feel included and to share their experiences and knowledge and educate others about HIV. It is a reminder that people living with HIV have the right to participate in the community free from stigma and discrimination.

Look out for the December 2011 issue of National Haemophilia in the next HFA E-news where Neil Boal gives a compelling account of his experience of living with HIV and hepatitis C co-infection and haemophilia and explains why he is committed to breaking down the barriers and stigma surrounding HIV and hepatitis C.

For more information about World AIDS Day, visit www.worldaidsday.org.au

Recombinant factor VIII tenders

Tue, 15 Nov 2011 13:17:33 +1000

The National Blood Authority (NBA) has recently completed tender processes for the supply of several blood products. The following information is important for people who are currently treated with recombinant factor VIII for haemophilia A:

Imported Plasma & Recombinant Product Tender Outcomes - Frequently asked questions (FAQs) for patients

http://www.nba.gov.au/supply/iprp-tender-faqs-patient.pdf

More information on the tender outcomes can be found on the NBA web site:

http://www.nba.gov.au/supply/iprp-tender-outcomes.html

Haemophilia Awareness Week

Fri, 07 Oct 2011 17:23:28 +1000

Haemophilia Awareness Week starts this Sunday 9 October and runs until Saturday 15 October 2011.

The theme this year is Health and wellbeing into the future – the decade ahead.

During Haemophilia Awareness Week Haemophilia Foundations, community members and health professionals around Australia work together to raise awareness about inherited bleeding disorders.

What does it actually mean to live with a bleeding disorder? People from the bleeding disorders community share the experiences of living with a bleeding disorder or of being a parent to a child with a bleeding disorder – the challenges faced every day, the reality of living with a lifelong disorder and what can be done about improving health and wellbeing into the future.

Most importantly during Haemophilia Awareness Week together we can all share and celebrate the ways we overcome these challenges as a community.

Getting involved

This year there will be local events including students doing school and classroom presentations, community sausage sizzles and health promotion across community groups, libraries, pharmacies, hospitals, doctors’ clinics and workplaces. One town is being "painted red"; some people are having a "wear red to work" day; others are holding quizzes.

How will you be involved in 2011?

Click here for more information, and to download or order promotion items.

Vale Peter Mathews

Mon, 12 Sep 2011 12:48:43 +1000

The HFA Council and Board acknowledges the passing of Peter Mathews on 5 September 2011.

Peter served as a respected Council member representing Haemophilia Foundation New South Wales (HFNSW) for many years and held the office of HFA Vice President from 2003-2009. Peter was also employed as the Executive Officer of HFNSW for more than 10 years.

Peter was loved and respected by everyone in the bleeding disorders community and everyone at HFA expresses their sympathy to Peter’s family.