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 year the theme is Access for All. Here, in Australia we are grateful that our community has access to high quality treatment, but we recognise that many parts of the world do not have access to diagnosis, treatment and care. Working with the World Federation of Hemophilia (WFH), HFA and many Australian volunteers have joined WFH GAP and Twinning programs, where established and emerging haemophilia organisations and haemophilia treatment centres around the world share their knowledge and help to improve treatment and care.
Established more than 15 years ago, the WFH Twinning Program aims to improve haemophilia care in emerging countries through a formal, two-way partnership between two haemophilia organisations or treatment centres for a period of four years. Twinned organisations or haemophilia treatment centres work together and share information, resulting in a mutually beneficial partnership. It is a great way to transfer expertise, experience, skills, and resources.
HFA has supported many programs over the years and participated in the WFH Twinning Program and various committees that work to achieve the objectives of WFH. Currently, HFA is twinned with the Myanmar Haemophilia Patient Association.
Jane Portnoy shares her experience travelling to Vietnam with the Haemophilia Treatment Centre team from the Alfred. Read Jane’s story.
The Ronald Sawers Haemophilia Centre (RSHC) at The Alfred Hospital, Victoria, was twinned with the National Institute of Haematology and Blood Transfusion Centre (NIHBT) in Hanoi, Vietnam.
Abi Polus shares her experience twinning in Vietnam, inspired by just how resourceful and hard working the Vietnamese doctors, physiotherapists and other members of the haemophilia team can be. Read Abi’s story.
Wendy Poulson shares her experience travelling to the Philippines with the Queensland Haemophilia Centre. Read Wendy’s story.
Sam Duffield and Leonie Demos describe their experiences of representing HFA at the National Member Organisation Twinning Meeting with the Myanmar Haemophilia Patient Association in March 2019. Read their story.
The importance of Twinning and GAP programs can’t be understated, and in recent years with COVID and political unrest they are even more crucial to help raise awareness and bring assistance to these hard working but under resourced communities.