National Haemophilia Journal PROBE study 19 June 2020 Do you have haemophilia or carrry the gene? Have you completed the PROBE (Patient Reported Outcomes Burdens and Experiences) questionnaire?… Read more
National Haemophilia Journal From the President Gavin Finkelstein - 19 June 2020 Advocacy, COVID-19, Treatment & care COVID-19, representation, treatment GAVIN FINKELSTEIN Gavin Finkelstein is President, Haemophilia Foundation Australia COVID-19 As we approach the mid-year reporting time for HFA, I… Read more
National Haemophilia Journal World Haemophilia Day 2020 19 June 2020 Events & awareness Light It up Red, World Haemophilia Day Every year on 17 April World Haemophilia Day is recognised worldwide to increase awareness of haemophilia, von Willebrand disease and… Read more
National Haemophilia Journal Light it up red! 19 June 2020 Events & awareness Light It up Red, World Haemophilia Day The following landmarks turned red in support of the day and we thank the authorities that organised this. ACT Telstra… Read more
National Haemophilia Journal Let’s talk about getting older Suzanne O'Callaghan - 22 June 2020 Advocacy, Getting older ageing, care, needs assessment, quality of life, treatment SUZANNE O'CALLAGHAN Suzanne O'Callaghan is HFA Policy Research and Education Manager When we first asked the nurses at Haemophilia Treatment… Read more
National Haemophilia Journal Why a needs assessment? Suzanne O'Callaghan - 22 June 2020 Advocacy, Getting older ageing, care, needs assessment, quality of life, treatment < Introduction Over the last several decades improvements to treatment and care have created a new phenomenon: for the first… Read more
National Haemophilia Journal What did we learn? Suzanne O'Callaghan - 22 June 2020 Advocacy, Getting older ageing, care, needs assessment, quality of life, treatment < Why a needs assessment? WHAT DID WE LEARN? ‘Ageing’ and ‘getting older’ The first thing that was made clear… Read more
National Haemophilia Journal What did we learn from PROBE? Suzanne O'Callaghan - 22 June 2020 Advocacy, Getting older, Research ageing, care, needs assessment, quality of life, treatment < What did we learn? We were able to access age-related data from the PROBE Australia Study in February 2020. … Read more
National Haemophilia Journal What will help? Suzanne O'Callaghan - 22 June 2020 Advocacy, Getting older ageing, care, needs assessment, quality of life, treatment < What did we learn from PROBE? Older people with bleeding disorders often develop strategies to work around their physical… Read more
National Haemophilia Journal Getting Older Info Hub Suzanne O'Callaghan - 22 June 2020 Advocacy, Getting older ageing, care, needs assessment, quality of life, treatment < What will help? Everyone was agreed that there needed to be more information about getting older with a bleeding… Read more
National Haemophilia Journal Next steps and thanks Suzanne O'Callaghan - 22 June 2020 Advocacy, Getting older ageing, care, needs assessment, quality of life, treatment < Getting Older Info Hub Where to next? The report includes a number of recommendations for HFA to discuss and… Read more
National Haemophilia Journal Physiotherapy during COVID-19 Alison Morris and Abi Polus - 22 June 2020 COVID-19, Joints & muscles, Sport & exercise, Treatment & care bleeds, COVID-19, exercise, physiotherapy Physiotherapy and bleeding disorders during COVID-19 ALISON MORRIS AND ABI POLUS Alison Morris is Senior Musculoskeletal Physiotherapist, Perth Children's Hospital… Read more
National Haemophilia Journal Surviving and thriving in times of pandemics Loretta Riley - 22 June 2020 COVID-19, Mental wellbeing COVID-19, mental health, resilience, stress LORETTA RILEY Loretta Riley is Advanced Social Worker, Queensland Haemophilia Centre, Royal Brisbane and Women's Hospital If I may hazard… Read more
National Haemophilia Journal What can we do about it? Loretta Riley - 22 June 2020 COVID-19, Mental wellbeing COVID-19, mental health, resilience, stress < Surviving and thriving in times of pandemics We don’t need to be passive participants in this environment. We all… Read more
National Haemophilia Journal News from South Australia 22 June 2020 Events & awareness, HFA & Foundation news South Australia Unfortunately the information evening that had been planned has been delayed by COVID- 19, but we hope when things start… Read more
National Haemophilia Journal When life changed with inhibitors 22 June 2020 Parents & families, Treatment & care haemophilia, inhibitors, treatment Belinda and Paul are parents of Christopher, aged 7, who has haemophilia and inhibitors. They talked to HFA about the… Read more
National Haemophilia Journal Youth News – Pat’s story 22 June 2020 Sport & exercise, Treatment & care, Young people adventure sport, haemophilia, treatment, Youth Successful management of haemophilia is key to playing competition sport, but for Pat it wasn’t always that easy. Pat running… Read more
National Haemophilia Journal WFH Virtual Summit 23 June 2020 The World Federation of Hemophilia (WFH) is committed to bringing the bleeding disorders community together in the name of Treatment… Read more
National Haemophilia Journal Calendar 22 June 2020 WFH Virtual Summit 14-19 June 2020 Bleeding Disorders Awareness Week 11-17 October 2020 Tel: 03 9885 7800 Fax: 03 9885… Read more
