“As a mother of a son with haemophilia it has always been a double-edged sword for me. On one side it feels unfair and unjust that we as a family have had to watch him with his challenges in life and the times that pain has been his enemy. However, like most of us I have always been so grateful for the medical care and the support we have in Australia.” – Leonie Demos, ‘Reflections on Twinning with Myanmar’
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.
“Our friends in Myanmar share a genetic disorder like us. They share a heart and passion to work together to support each other and provide support for the rough times they face. But they have great challenges every day in living with a bleeding disorder and much to do to achieve the level of diagnosis, hospital services and treatment they need to live well.” – Leonie Demos, ‘Reflections on Twinning with Myanmar’
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.
“What could I bring to a country I don’t know, with resource needs that I can’t meet. I also wanted to think about how this trip could contribute to the service that I provide to my work here in Melbourne.”
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.
“I asked one child if he had crutches? “I do”, he told me proudly. ‘Big ones. I am just waiting until I grow into them!’”
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
“We take so many things for granted in Australia. There was a tiny little room, no air conditioning and to survive in the heat, the husband of one of the consultants “bought” the additional electricity required for a fan to be used in the room.”
Wendy Poulson shares her experience travelling to the Philippines with the Queensland Haemophilia Centre. Read Wendy’s story
“Sam and I felt our privilege in every way during our time in Myanmar. We also felt the hope and passion of a group of very special people who want to work together to improve treatment, care and peer support in their country. We have skills and experience to share and together we will work to do what we can knowing all our extended community is behind us.”
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.
“There might not be a lot of us, but we all share a lot of the same experiences and can help each other and continue to improve the situation locally within Australia and globally.” – Sam Duffield, ‘Myanmar Twinning Visit’