News

Vision & Leadership Awards

Tue, 14 May 2013 16:54:01 +1000

The closing date for the HFA Vision and Leadership Award applications has been extended to 24 JUNE 2013.

Make a difference in your life to help you reach your full potential.

Is there a course you want to do? A conference you want to attend? Want some specialist coaching? Or some technology to help with a special project?

The HFA Vision & Leadership Awards are open to everyone over 15 years of age who is affected by a bleeding disorder – and needs a little financial help to take that next step.

There are 5 awards of $2000 – so… why not apply?!

Click here for more details and to download the application form

or request a print copy from HFA on 1800 807 173

Caleb’s Vision & Leadership Award Story:

Last year Caleb, a young person from Tasmania, applied for an HFA Vision and Leadership Award … and was successful! It was for the 23rd Australian Scout Jamboree and he was able to join 11,000 Scouts from 20 nations for two weeks, and was selected as one of only two Tasmanians on the National Youth Council. He had a great time, learned a lot and came away with a sense of fulfilment and pride. This is what the Awards are all about. And it could be you this year…if you apply!

The Vision & Leadership Awards are a Haemophilia Foundation Australia Awards Program and are sponsored by Pfizer Australia.

Close the Gap campaign

Wed, 10 Apr 2013 18:15:04 +1000

“Join me in supporting the WFH Close the Gap campaign so that together we can make a difference worldwide.”

Gavin Finkelstein, HFA President and regional co-chair of the WFH Close the Gap campaign

How can Australians be involved?

You may have seen the postings on our Facebook page from friends and colleagues in countries such as the Philippines, Bangladesh and Somalia where there is not enough treatment to treat bleeds or the ordinary person cannot access treatment and heard about the great hardships these people with bleeding disorders experience.

75% of people with a bleeding disorder do not receive adequate care or any care at all. Around the world millions of men, women, and children suffer needlessly with pain, stigma and disability and many children do not survive to adulthood.

In 2012 the World Federation of Hemophilia (WFH) launched a 3-year campaign to close the gap in care worldwide.

In 2013 World Haemophilia Day is dedicated to the WFH 50th anniversary and accelerating its vision of treatment for all.

Watch the WFH video to see why this is so important

What can you do to be involved?

This is our opportunity to make a difference.

Find out about the Close the Gap campaign and share it with your family, friends and work colleagues
Make a donation to the WFH Close the Gap campaign (please note that WFH is an international agency based in Canada and donations are not tax deductible)
Stay tuned for the Close the Gap campaign activities that will be at the World Congress in Australia in 2014 and give them your support.

What do donations to the Close the Gap campaign achieve?

Train healthcare professionals to diagnose and treat people with bleeding disorders
Teach patients and families how to ease the suffering and pain of a bleed and of swollen joints
Deliver life-saving treatment to those in urgent need.

WFH Programs that make a difference

Australia was one of the first countries to join WFH when it was founded in 1963. HFA remains committed to WFH and its programs and we continue to be astounded year after year at the difference these programs can make. Many Australians have been involved personally in the programs, such as Twinning, through HFA or their Haemophilia Centre. “With Twinning you really get a sense that there is a world of haemophilia. It’s quite inspiring to see what has been achieved,” said Gavin Finkelstein.

Why do these programs make a difference?

Global Alliance for Progress (GAP) and Twinning partnerships: the GAP Program builds on existing resources in an emerging country to improve diagnosis and access to treatment and to make sure it is sustainable.

You will see from the National Haemophilia articles about Australian twinning partnerships with Thailand and Vietnam that these “existing resources” include people - committed and inventive community members and health professionals who are determined to improve their skills, to reach out to other people with bleeding disorders in their country, and to bring their government on board with support for services and access to treatment.

An example – achievements in Thailand through GAP and twinning:

2006 – Haemophilia is included in Thailand’s universal health coverage scheme. The government buys factor concentrates.

2009 – The care network grows to 39 haemophilia treatment centres spread throughout most regions. Thailand has 1030 patients diagnosed with haemophilia registered in the national system.


The Thai-Australia Twinning team
	Now - learning self-infusion at a family camp in Thailand

The Cornerstone Initiative: targets countries that have very low levels of care and access to treatment and provides support, expertise and training to better manage bleeding disorders. This lays the foundations for basic care and sets up the partnerships that can develop later through other WFH programs, such as GAP and Twinning.

Click here for more information about World Haemophilia Day and the Close the Gap campaign.

WFH 2014 World Congress Website Launch

Wed, 27 Mar 2013 09:49:59 +1000

The Congress web site www.wfh2014congress.org is live. The web site is full of information to start preparing for your congress experience.

Get in early as early registration opens on May 11th and ends on November 11th.

New hepatitis C treatments

Thu, 14 Mar 2013 10:23:55 +1000

Two new hepatitis C treatments will made available on the Pharmaceutical Benefits Scheme (PBS) by the Federal Government.

The Federal Minister for Health, Ms Tanya Plibersek, announced on 19 February 2013 that boceprevir (Victrelis®) and telaprevir (Incivo®) will be subsidised by the government for adults with hepatitis C genotype 1. This will make the treatment more affordable. If they were not available through the PBS, these medicines could cost individuals up to $78,000 a year.

“These breakthrough medicines represent new hope for patients with hepatitis C,” said Ms Plibersek.

When combined with the current standard hepatitis C treatment of ribavirin and pegylated interferon, boceprevir and telaprevir can increase the cure rate for people with hepatitis C genotype 1 from around 40% to around 75%. The length of treatment can also be shortened to around 6 months for some people.

Even people with genotype 1 who have had unsuccessful treatment in the past see some improvements in success rates, ranging from around 30% for people who previously had a “null response” to around 75-85% for those who relapsed after treatment. However, there is also the potential for additional side-effects such as rash and anaemia and the new treatments require careful monitoring and management by the treating specialist.1

Haemophilia Foundation Australia (HFA) welcomes the announcement by the Minister for Health.

“These treatments are an important development for the bleeding disorders community and we have made a number of representations and submissions to the Government about them,” said Gavin Finkelstein, HFA President.

“We are very pleased to hear that they will be available on the PBS. This will give some further treatment options to some members of our community who have been living with long-term hepatitis C infection and advancing liver disease. Many people with bleeding disorders who have hepatitis C genotype 1 have previously had unsuccessful treatment or have delayed treatment until more promising treatment options came along.”

For more information about hepatitis C treatment, contact your local hepatitis or liver clinic or speak to your Haemophilia Centre.

REFERENCES

1.Dore DJ. The changing therapeutic landscape for hepatitis C. MJA 2012;196:629-632.

Rare Disease Day

Thu, 28 Feb 2013 15:25:06 +1000

Today is Rare Disease Day. This day is marked internationally and hundreds of patient organisations from more than 60 countries and regions worldwide have put together activities to raise awareness about rare diseases and their impact on people’s lives.

The theme this year is “Rare Disorders without Borders”.

When there is only a small number of people with a rare disease in each country, the people affected can feel isolated. Expertise for treatment and research can be scarce and scattered.

Reaching out across borders can help find common solutions and remind people they are not alone. International collaborations for research and health policy are more likely to bring advances in treatment and care.

Find out more at www.rarediseaseday.org. For information on events in Australia, click here .

QLD Haemophilia Centre Flood Update

Wed, 30 Jan 2013 12:49:32 +1000

Qld Haemophilia Centre Flood Update 30 January 2013

PATIENTS IN FLOOD AFFECTED QUEENSLAND

We are hoping that waters are receding in your areas.

If you have power, please return to normal storage of haemophilia products. If you have had a power outage or still do, please make contact with the Haemophilia Centre to discuss your individual situation.

The Haemophilia Centre phones are being monitored; however someone might not be able to take your call immediately. Please leave a clear message about what your haemophilia related problem may be, your name, and always clearly and slowly leave your phone number or how to contact you. We will do our best to return your call, but this may be dependent on power supply in your area

If you decreased your normal prophylaxis regime, please return to normal usage.

Haemophilia Centre telephone numbers:
RBWH – 07 3646 5727
RCH – 07 3636 9030

For patients in the Brisbane Area - if for some reason you cannot make contact with the haemophilia centre, please ask the hospital switchboard to put you through to the:

adult haematologist on call
or
paediatric haematologist on call
Hospital Switchboard – 07 3646 8111

For patients in rural areas - please contact your local hospital first, and if necessary they can then make contact with the adult or paediatric haematologist on call.

If you are unable to keep clinic appointments this week, we would appreciate it if you could you ring and let us know, as other people may be able to have your appointment time.

Haematology Warriors ride for HFA

Thu, 24 Jan 2013 15:22:01 +1000

The Haematology Warriors - the fearless Haematology team at the Royal Adelaide Hospital – are embarking on a grand challenge for a cause close to their hearts. On Friday 25 January the Haematology Warriors will don their cycling gear and ride in the epic Tour Down Under Challenge as a fundraiser for Haemophilia Foundation Australia. They will compete as Team Factor. Tour Down Under Challenge The team will ride the same route on the same day as the elite cyclists in the Stage 4 of the Santos 2013 Tour Down Under in South Australia. They will be cycling a massive 127 km from Modbury, just north of Adelaide, to Tanunda in the Barossa Valley.
The team Team Factor consists of: Haemophilia Centre Director Dr Simon McRae, haemophilia nurse Andrew Atkins, research nurse Donna King, and haematologist Uwe Hahn. Inspiration Why take on a tough ride like this? You might remember that Alex Dowsett, a professional cyclist from the UK with severe haemophilia, cycled in the Tour Down Under last year. Inspired by Alex, the Haematology Team decided to take on the Challenge ride for HFA in 2013. How to keep up and support them Team Factor has invited supporters to visit their donation page and encourage them to endure the gruelling 127km ride – “Make every bead of blood, sweat and tears count!!” Click here to visit the Haematology Warriors’ donation page. Simon McRae Simon is also giving updates on Twitter - @simonmcraefish HFA is making posts on the HFA facebook page More information about the event is at http://www.tourdownunder.com.au.
	Andrew Atkins and Simon McRae

Christmas Office Closure

Wed, 19 Dec 2012 15:22:58 +1000

The HFA office will be closed from Friday 21 December 2012 and reopen on Monday 7 January 2013.

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 0410419914.

We wish you a safe and happy festive season.

World AIDS Day

Fri, 30 Nov 2012 17:23:25 +1000

Every year World AIDS Day is celebrated globally on 1 December.

For the bleeding disorders community in Australia it is a day to remember the community members 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, resilience and determination to build a better future.

In 2012 the World AIDS Day global campaign theme is:

Getting to zero

• Zero new HIV infections
• Zero discrimination
• Zero AIDS related deaths

In Australia, the aim is to encourage all Australians to be aware that HIV still exists in the community; to take action to prevent transmission of HIV by promoting safe sex practices; to support and understand people living with or affected by HIV; and to uphold their right to participate in the community free from stigma and discrimination.

This year World AIDS Day highlights the role of HIV positive people in strengthening community spirit. It is a reminder how important it is for people living with HIV to share their experiences and knowledge and educate others about HIV, resilience and the personal skills needed to adapt and manage hardship. This is particularly true of the bleeding disorders community where people may live with and manage multiple health conditions.

Look out for the December 2012 issue of National Haemophilia where we hear from the national research on HIV and resilience, some personal accounts of strategies people with HIV and haemophilia use to manage disclosure and the potential for discrimination - and exciting new scientific developments at an international level.

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

Haemophilia Awareness Week

Sun, 07 Oct 2012 00:00:00 +1000

Haemophilia Awareness Week starts today and runs until Saturday 13 October 2012.

The theme this year is “Achieving your Dream” and during the week we are running Red Cake Day!

Haemophilia Awareness Week is an opportunity for haemophilia foundations and other organisations, as well as individuals and families, to take part in a campaign and activities to raise awareness about haemophilia and related inherited bleeding disorders throughout Australia.

Read the special edition Haemophilia Awareness Week newsletter. Highlighted are great personal stories about Chris Gordon, AFL umpire, and a young boy Adam Field - click here.

Download promotional items from our website - click here

For more information about awareness week - click here

RED CAKES CAN CHANGE LIVES!

It’s true. They can. That’s why HFA is calling on our friends and supporters to help us celebrate Haemophilia Awareness Week by taking part in our first Red Cake Day!

It’s easy ... All you have to do is pick a day during Awareness Week to bake red cakes or cupcakes, decorate them, and share them with your friends or work colleagues in exchange for a donation or a gold coin. You could take them to work, school, have a cake stall or simply host an afternoon tea with your nearest and dearest family and friends. Not only will you be having a delicious morning tea but you’ll be helping raise funds and spread the word about haemophilia and other inherited bleeding disorders! Then, simply send the donations to Haemophilia Foundation Australia. All funds raised will go to a range of programs and services ran around the nation to benefit people with a bleeding disorder and their families.

For more information on RCD visit our website -click here

Stuck for a recipe? Why not check out our website for some yummy red ideas! -click here

EVENTS AROUND THE COUNTRY
Victoria
In Neerim South in regional Victoria once again “Paint the town red” will be staged on Saturday 13 October. Come down and enjoy the sausage sizzle and some yummy red cakes. Thanks to the Donna Field for organising the event, the local community, and Neerim District Community Bank®.

Bendigo Banks in the South Gippsland region will be participating during awareness week and will have promotional items at all branches and will be fundraising. Thank you to the branches and their staff.

Queensland
In Brisbane Hugo Mitchell and his family are organising Ride for a Cure on Sunday 7 October. The aim of the event is for participants to ride/wheel as many laps as they can around the Nundah Criterium Circuit over a 30 minute period. Each lap is approximately1.2km. This event is not a race. All skill levels, including those on scooters and in wheelchairs, are encouraged to participate.

South Australia
A Red Cake Stall will be held in the town of Eudunda on Friday 12 October. Come down and purchase some yummy cakes.

We have quite a few Red Cake Days happening around the nation in workplaces, kinders, schools and libraries. Thank you to the hosts for organizing and colleagues, family and friends for participating in Red Cake Day.

PHOTO GALLERY
Photos will be uploaded daily on the HFA facebook page – become our friend today - http://www.facebook.com/pages/Haemophilia-Foundation-Australia/71943956088
OR
Check the photo gallery on our website daily - click here

Date: 07/10/12