News

We're excited to announce that together with ACMI we're hosting a free mythbusting animation workshop during the 2023 Conference in August. Perfect for creative kids aged 10-16 years old, the workshop is an opportunity to meet new people, help bust myths about bleeding disorders and learn how to animate. The workshop will run from 12pm onwards on Saturday 25 August 2023.

It's Careers Week! Running 15-21 May 2023, this week we're sharing stories from our community and expert advice to help you follow your passion. Whether you're just starting to think about your career, ready for your first job, or looking to do something different, there's a lot to consider. And adding a bleeding disorder to the mix doesn't make things easier.

Today is World Haemophilia Day. Every year on 17 April World Haemophilia Day is recognised worldwide to increase awareness of haemophilia, von Willebrand disease and other inherited bleeding disorders. This is a critical effort since with increased awareness comes better diagnosis and access to care for the millions who remain without treatment.

The March 2023 National Haemophilia is now available to read on our website. Catch up on the latest information and personal stories from our community, including 'Haemophilia - what's possible?', tips for young people with a bleeding disorder, Rare Disease Day and more.

Today is International Women’s Day! Help us celebrate the women in the bleeding disorders community – whether they’re women with bleeding disorders or mums, partners, daughters, sisters, nurses, doctors, social workers or counsellors, physios, researchers, or carers. Thank you for being part of our community and advocating for us.

Today is Rare Disease Day. It’s a day when we join together worldwide to raise awareness about what it is like to live with a rare health condition. While haemophilia is rare, some other bleeding disorders are even rarer. Today we put the spotlight on the range of bleeding disorders and the particular issues for people living with very rare disorders.
 

Are you thinking about starting or changing your career? We have recently made substantial updates to the employment information on our Factored In website for youth.

In the February 2023 newsletter we share resources for starting school, updated employment advice, celebrate Rare Bleeding Disorders Day and more. Are you subscribed to HFA news? Join our mailing list here: https://www.haemophilia.org.au/sign-up

Save the date! The 21st Australian Conference on Haemophilia, VWD and Rare Bleeding Disorders will be held on 24-26 August, 2023 in Melbourne. Registration will open soon.

Read the January 2023 newsletter for information about starting school with a bleeding disorder, Willem's story, 'The Spice of Life', and opportunities to participate in research studies. Are you subscribed to HFA news? Join our mailing list here: https://www.haemophilia.org.au/sign-up

The 2021-2022 HFA Annual Report is now available to read online. Learn more about what we've been up to over the past year and check out all the beautiful photos of our community helping to raise awareness for bleeding disorders.

The HFA Council and Staff wish you a happy and safe festive season.

The HFA office will be closed from Friday 23/12/2022 and reopen on Monday 9/01/2023. Should you have any queries or need to contact HFA please call 03 9885 7800 or email hfaust@haemophilia.org.au. Messages during that time will be monitored.

The December 2022 National Haemophilia is hot off the press and ready to read on our website. Catch up on the latest information and personal stories from our community, including Bleeding Disorders Awareness Month, new haemophilia therapies, tips for parents on starting school and more.

Complete our survey and help us develop fact sheets on new haemophilia therapies!

The December newsletter features Gavin's camping story, travel tips, market research studies and more. Are you subscribed to HFA news? Join our mailing list here: https://www.haemophilia.org.au/sign-up

Today is World AIDS Day, marked globally on 1 December. It’s a day when many wear a red ribbon to show support for people with HIV. This is a time when we are mindful of our community members living with HIV and commemorate those with HIV who have passed away. It is also a reminder to bring this awareness to our everyday life as a community.

Join us in recognising and supporting our community affected by HIV not only today but every day.
 

Fiona is in her 50s and shares her story about growing up with VWD, how much more information is available now and how she manages her VWD and treatment today.

https://tinyurl.com/fiona-vwd

Over Bleeding Disorders Awareness Month HFA hosted 4 webinars that covered very topical and current topics.  

• Travel Tips
• New Therapies
• Choosing or changing your career path
• Your rights: Superannuation and insurance webinar

They are now available to view online

The September 2022 issue of National Haemophilia is now available online

Our bleeding disorders community is made up of many faces – and we want to see yours! Grab a fact, make a video about it, and help raise awareness for bleeding disorders.

Australian submissions received by 31 October 2022 could win a $50 voucher – there are a few up for grabs.

Today is World Hepatitis Day.

2022 FUNDING ROUND OPEN!

The Damon Courtenay Memorial Endowment Fund (DCMEF) was established by Haemophilia Foundation Australia in 1994. 

We're celebrating Men's Health Week. This week is all about supporting the health and wellbeing of men and boys in our community. Keep an eye on our socials as members of our community share their advice on friendships, hobbies, resilience and more.

We are pleased to announce our new education resource, Haemophilia testing in women and girls: your questions answered.

Have you caught up on the 2021 Conference on demand?

With over 30 Australian and international speakers and a range of stimulating and informative sessions, there is so much for you to see. Don’t miss out - it will be available on demand until April 2022.

https://haemophilia.delegateconnect.co/

The WFH 2022 World Congress will take place in Montreal, Canada on 8-11 May 2022, both face-to-face and virtually.

World Haemophilia Day is a month away.  Click here for more infomration and Light It Up Red locations 
www.haemophilia.org.au/WHD

Today is Rare Disease Day, a day when we join together worldwide to raise awareness about what it is like to live with a rare health condition.

The HFA Council and Staff wish you a happy and safe festive season. The HFA office will be closed from Friday 24 December 2021 and reopen on Monday 10 January 2022.

Thank you to everyone who gave feedback in our 2021 Getting Older Info Hub survey. We're pleased to announce the prize draw winner.

World AIDS Day is marked globally on 1 December. This is a day to raise awareness about HIV. It is a day when we are mindful of our community members living with HIV, of demonstrating our support for them and commemorating those with HIV who have passed away. 

The HFA COVID-19 vaccine FAQs have been updated.

We’re excited to kick off Bleeding Disorders Awareness Week today!  This week is an opportunity for individuals and families like you to take part in the campaign and get involved in activities to raise awareness about haemophilia, von Willebrand disease and related inherited bleeding disorders throughout Australia.
 
The theme of the week is Embracing a Changing World and follows on from our most successful virtual conference held the past few days.
 
There are some great digital ways that you can participate in the week and downloads ~ Colour in sheet, word find, scavenger hunt, Poster, cupcake toppers – download them here

Help us to improve the HFA Getting Older Info Hub - complete our survey today!

The latest edition of National Haemophilia is now available. In the September issue we explore a range of topics as well as including a special feature on the upcoming 2021 conference and Bleeding Disorders Awareness Week.

Together with Beautiful Minds, Haemophilia Foundation Australia is running virtual workshops in October to coincide with the 20th Australian Conference on Haemophilia, VWD and Rare Bleeding Disorders.

What questions would you like to see answered at our upcoming conference? We're reaching out to everyone in the community to send in your questions in advance for the 20th Australian Conference on Haemophilia, VWD and Rare Bleeding Disorders.

Thanks to everyone who completed our Female Factors survey.

The HFA COVID-19 vaccine FAQs have been updated.

Today is World Hepatitis Day. In 2021 we join the global community in the message of Hep can’t wait!, reminding us that we need to be proactive and act on viral hepatitis.

Help us to improve our education resources for young women. Complete our survey today!

The poster abstract deadline for the 2021 Conference has been extended to 31 July 2021

Have you been receiving your HFA e-news over the last few months? If not, check your junk folder!

We have released a new fact sheet, Sport and exercise for girls and young women with bleeding disorders.

HFA hosted 2 webinars for World Haemophilia Day

Today is World Haemophilia Day! Join us in the global campaign to raise awareness about bleeding disorders.

An update on the advice for people with bleeding disorders about the COVID-19 vaccines.

The 20th Australian Conference On Haemophilia, VWD And Rare Bleeding Disorders will take place this year from 8-9 October 2021 virtually. 

Registrations are now open - for more information and registration click here 

Rare Disease Day is celebrated worldwide on 28 February 2021 to raise awareness about the experiences of people with rare diseases

Answers to FAQs about the COVID-19 vaccine for people with bleeding disorders

A new funding round for the HFA Research Fund is now open.

The HFA Council and Staff wish you a happy and safe festive season. The HFA office will close on Thursday 24 December 2020 and reopen on Monday 11 January 2021.

Today is World AIDS Day - a day when we are mindful of the members of our community living with HIV and those with HIV who have passed away.

An update from HFA about the arrangements to access Hemlibra®, a treatment for haemophilia, and HFA’s ongoing work to advocate for new treatments.

The National Blood Authority (NBA) released information today about the arrangements to add emicizumab (Hemlibra®) as a treatment for Australians on the National Product List.

Emicizumab (Hemlibra®) will be publicy funded as a treatment for Australians with haemophilia

It's R U OK day today.

How much do you know about bleeding disorders in women and girls? Find out in our fun quiz for Women's Health Week 2020.

Due to extended Covid-19 restrictions in Victoria, HFA staff will continue to work from home and the office is completely closed. Calls to 0398857800 and 1800 807 173 numbers will continue to be redirected and answered and you can contact HFA staff via hfaust@haemophilia.org.au or visit Meet the staff for our direct contacts.

Our mail is being safely held at the Post Office.  Please note that donations made by post will be processed after the lockdown period when we can return to our office. You can continue to make donations online at www.haemophilia.org.au/donate. 

We thank you for your support and know that HFA will continue to support the bleeding disorders community and operate as closely to business as usual.

Today is World Hepatitis Day.

The Getting Older community report is now available on the HFA website

HFA staff are continuing to work remotely from home during the current COVID-19 crisis.

The National Blood Authority tender for EHL treatments was announced today

The HFA Getting Older with a bleeding disorder report is now available!

Visit the new HFA Getting Older Info Hub for the information you need to navigate getting older with a bleeding disorder

The World Federation of Hemophilia (WFH) Virtual Summit is commencing on Sunday 14 June 2020.

The public comment period for the VWD Guidelines has been extended to 15 May 2020.

A message from Sharon Caris, HFA Executive Director, about connecting during the COVID-19 crisis

Happy World Haemophilia Day and on this special 30th anniversary.
 

The WFH is seeking comment from the VWD community worldwide on the draft international VWD guidelines and recommendations.

The World Federation of Hemophilia has published a Medical News release on specific risks to people with bleeding disorders if they acquire COVID-19.

An update from HFA on COVID-19

An update on the latest information about coronavirus (COVID-19)

HFA staff are now working remotely during the current coronavirus crisis. 
 

Rare Disease Day will be celebrated on 29 February 2020. Its aim is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives.

HFA has been asked about the safety of clotting factor treatments made from human blood plasma in the context of Coronavirus (COVID-19).
 
Lifeblood (formerly the Australian Red Cross Blood Service) has confirmed that donor screening procedures in Australia to prevent individuals who show disease symptoms typical of a coronavirus infection, including COVID-19, are routinely in place, and will continue to be reviewed. There is no current evidence suggesting coronavirus is transmissible by blood transfusion and other similar respiratory viruses are not known to be transmitted by blood. Virus detection in the blood has only been detected in a relatively small proportion of unwell patients who would not be eligible to donate blood. Further, dry heat treatment, solvent detergent and other steps used in the fractionation process inactivate and remove viruses.
 
In relation to ongoing supply of treatment products in Australia, the National Blood Authority has contracts with suppliers in place to ensure adequate supplies of local and imported clotting factors, including national reserves and advises there is no reason to expect any threats to supply at this time.
 
HFA will continue to monitor the situation and provide updates.
 
For up to date information about the Coronavirus situation see
https://www.health.gov.au/health-topics/novel-coronavirus-2019-ncov

Please let HFA know if we can assist bleeding disorder community members affected by the bushfires.

It's not too late to complete the PROBE study!

The HFA Council and Staff wish you a happy and safe festive season.

HFA invites you to take part in the Getting Older community survey

Today is World AIDS Day.

HFA has released a new resource, Gene therapy for haemophilia

Bleeding Disorders Awareness Week starts today!

We apologise but HFA phones are currently down, pls call 0410 419 914 or send a email to the person you are trying to contact or hfaust@haemophilia.org.au and we will call you back 

Congratulations to the winner of the Female Factors survey prize draw!

Today is World Hepatitis Day.

Help us with your feedback on our new The Female Factors booklets!

The Medical Services Advisory Committee (MSAC) has invited stakeholder input in relation to government funding for emicizumab (Hemlibra®). 

The real-world PROBE study is now available!

Today is World Haemophilia Day. How will you reach out and connect with your community?

Another new treatment for hepatitis C, Vosevi® (sofosbuvir with velpatasvir and voxilaprevir), has been made available on the PBS from 1 April 2019.

The 2019-2020 funding round for the HFA Research Fund is now open.

Team.Factor took on the 2019 Challenge Tour in South Australia once again on Saturday 19 January 2019.   

Rare Disease Day will be celebrated on 28 February 2019.

HFA has released a new resource in The Female Factors project - Telling others about bleeding disorders: information for women, girls and their parents

A group of cyclists led by Andrew Atkins will ride as Team.Factor in the 2019 Challenge Tour in South Australia on Saturday 19 January 2019.  

Tell us your questions about gene therapy to help us develop a new education resource.

The National Blood Authority (NBA) announced today that they will include Extended Half-Life (EHL) factor VIII and factor IX products in the next national tender for clotting factors and related products, currently planned for 2019. 

The recipients of HFA Go For It grants for 2018 have been announced.

World AIDS Day is marked globally on 1 December. In 2018 we look to the national theme of Everyone counts and remind ourselves of the impact of HIV on our community and worldwide.

The HFA Youth Canoe Journey has been postponed.

We are very pleased to announce the release of Female Factors, our new resource about bleeding disorders for young women.

It’s the start of Bleeding Disorders Awareness Week until Sat 13 October.  This 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, von Willebrand disorder and related inherited bleeding disorders throughout Australia.

Go to BDAW HFA for more information and downloads

Why is HFA changing VWD from von Willebrand disorder to von Willebrand disease?

On the Move with Haemophilia is a new online educational program about exercise and sport for young people with haemophilia

The closing date for Go for it Grants applications has been extended to Friday 21 September 2018.

Applications for the HFA Youth Canoe Journey have now been extended until Friday 31 August 2018.

A new hepatitis C treatment, Maviret®, was added to the Pharmaceutical Benefits Scheme on 1 August 2018.

Thank you to everyone who gave feedback in our The Female Factors survey. And congratulations to our prize draw winner!

On 17 April World Haemophilia Day is recognised globally to increase awareness of haemophilia and other inherited bleeding disorders. The theme for World Haemophilia Day 2018 is ‘Sharing Knowledge Makes Us Stronger’. 

Help us to improve our The Female Factors booklets with your feedback!

Today is Rare Disease Day. Join us in making the voice of people with rare diseases heard!

For the sixth year a group of cyclists led by Dr Simon McRae and Andrew Atkins will ride as Team.Factor to take on the BUPA Challenge Tour in South Australia on Friday 19 January 2018. 

The HFA Council and staff wish you a happy and safe festive season.

Today researchers at Royal Prince Alfred Hospital in Sydney and their international collaborators announced a breakthrough in gene therapy for haemophilia B.

Today is World AIDS Day.

The Rt Hon Sir Ninian Stephen, HFA’s Patron for many years, died on the weekend, aged 94.

We are very pleased to announce that the new HFA folder Haemophilia - a guide for parents of a newly diagnosed child is now available.

From Tuesday 22 August 2017 if you want to use the REMEMBER ME function on the MyABDR app, you will need to set a 4-digit pin.

From 1 August 2017 a new hepatitis C treatment has been made available on the PBS to treat people who have any strain of hepatitis C virus (HCV). 

Today is World Hepatitis Day.

This year we celebrate World Hepatitis Day with the stories of people with haemophilia who have been cured of their hep C.

Help HFA to comment to the Australian Government about the impact of private health insurance on the bleeding disorders community - complete the HFA community survey by 24 July 2017

Complete the MyABDR user survey by Friday 30 June 2017. Tell us about your experience of MyABDR and changes you would like to see in the future

HFA is pleased to announce the release of the new The Female Factors booklet, Haemophilia - Finding out you carry the gene.

TODAY IS WORLD HAEMOPHILIA DAY!

In 2017 the theme for World Haemophilia Day is Hear Their Voices – showing support for the millions of women and girls affected by bleeding disorders.

It is an opportunity to bring attention to the women and girls in our community who live with a bleeding disorder or have someone in their lives who does.

Take on the challenge and wear a red tie/scarf to raise awareness for people with bleeding disorders #RedTieChallengeAUS send us your pic!

On Rare Disease Day research brings hope.

The closing date for the HFA Go For It Grants has been extended to Friday 24 February!

For the fifth year in a row Team.Factor rode in the gruelling 2017 BUPA Challenge Tour to fundraise for their favourite cause - Haemophilia Foundation Australia.

Support Team Factor in their ride in the 2017 BUPA Challenge Tour!

Today is World AIDS Day.

Join us in celebrating Haemophilia Awareness Week - 9 to 15 October 2016

The Guidelines for the management of haemophilia in Australia have now been released.

These new Guidelines are a first for Australia, with multidisciplinary advice on care and management of people with haemophilia that is relevant to an Australian setting.

Today is World Hepatitis Day.

In 2016 revolutionary new hep C treatments are now available. 

What is so exciting about the new hep C treatments for people with bleeding disorders? 

Watch our video to find out more from the experts! 

Get your copy of The Female Factors snapshot now! - HFA's introductory booklet on bleeding disorders in females

Sunday April 17 is World Haemophilia Day. Connect to the international community to help achieve Treatment for All!

From 1 March 2016 new breakthrough hepatitis C treatments will be available on the PBS

It’s a day when people living with a rare disease, or those affected by it, community organisations, carers and health professionals, researchers, government and industry come together in solidarity to raise awareness of rare diseases.

 

For the fourth year a group of cyclists led by Dr Simon McRae and Andrew Atkins will ride as Team.Factor to take on the BUPA Challenge Tour in South Australia on Friday 22 January 2016. The 2016 Bupa Challenge Tour will be from Norwood to Victor Harbor, just over 140kms. 

A very welcome Christmas message for our community: Australian Minister for Health Sussan Ley has announced that new breakthrough hepatitis C treatments will be available on the PBS from 1 March 2016.

World AIDS Dayis marked internationally on 1 December.
This is a time to raise awareness in the wider community about the issues surrounding HIV and AIDS...

With time running out for many people with hepatitis C, Haemophilia Foundation Australia joined Hepatitis Australia and 25 other health organisations today in an open letter to Australian Health Minister...

HFA welcomes the recommendation of the Pharmaceutical Benefits Advisory Committee (PBAC)​ to add Viekira PAK® to the Pharmaceutical Benefits Scheme (PBS) for the treatment of chronic hepatitis C genotype 1...

Thanks to everyone who completed the HFA National Member Survey... 

Make sure you answer the HFA National Community Survey to be in the draw to win great prizes!

Are you ready to take action on World Hepatitis Day?

The Australian Government has released The Silent Disease - Hep C Inquiry report

Complete the survey and have your say on HFA's programs and services

PBAC has recommended new hepatitis C treatments for listing on the PBS 

April 17 is World Haemophilia Day and landmarks are turning red worldwide

Thank you for your contributions to the HFA hep C survey

It's not too late to tell your story for the government inquiry

If you are a Haemophilia Centre patient you will need to complete  new ABDR MyABDR privacy consent form 

Complete the HFA survey and tell your story for the Hep C inquiry

A new Australian Government inquiry into hepatitis C was announced this week

An update on the availability of new hep C treatments in Australia

The 2014 International AIDS Conference will take place in Melbourne 20-25 July 2014.

The National Blood Authority (NBA) has finalised the new contracts for the ongoing supply of clotting factor treatment products in Australia.

Please help HFA to tell the Australian Government about your views on new hepatitis C treatments

Are you affected by hep C? Help us to tell government about your health care costs

The official launch of MyABDR recognises a world first app and web site for people with bleeding disorders

MyABDR is now available. Find out how to register and get started!

Haemophilia treatments - tell us what you think.

Complete the MyABDR survey and enter the draws for great prizes!

The MyABDR project to develop an app for people to record treatment and bleeds has commenced!

What do the blood product tender processes mean for people currently treated with recombinant factor VIII for haemophilia A? Important information is now available .

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

The Fogarty family talk about their haemophilia experience on Australian TV news for World Haemophilia Day. 

Members of the World Federation of Hemophilia General Assembly today voted that Melbourne will be the host city for the 2014 World Hemophilia Congress.

Results presented at an international conference have given hope of a cure for those people in Australia with bleeding disorders who also live with hepatitis C. 

Update on the detection of vCJD in the post mortem of a UK man with haemophilia A