The International Bleeding Disorders Family
Globally, 70% of people with a bleeding disorder don’t have access to any or adequate treatment. We are extremely fortunate in Scotland to have access to some of the best treatment and care in the world. However, that comes with a responsibility to work with others around the world to help close the gap between those who have access to the treatment they need and those who don’t. Engaging with the international bleeding disorders family also helps us improve our services and keep up to date with the best practice in the treatment and care of bleeding disorders from around the world.
The Malawi Project
Scotland has a long association with Malawi and there are many links between our two countries. That is why we decided to focus our international effort on support individuals and families with bleeding disorders in Malawi as they work with healthcare professionals to improve treatment and care.
In Malawi, proper diagnosis and treatment is effectively non-existent; the baseline infrastructure, resources, and time do not exist to tackle chronic conditions like bleeding disorders and there is a lack of knowledge amongst many healthcare professionals which often results in premature death.
During our first visit to Malawi, in 2014, we were honoured to play a part in the establishment of the a patient association for people with bleeding disorders in Malawi and to meet the Health Minister.
Inspiration from Nigeria
This short video is an inspirational example of what can be achieved to improve the lives of individuals and families with bleeding disorders when patient organisations are founded.
Scotland is not recognized as country by the World Health Organisation (WHO) despite health being completely devolved to the Scottish Parliament and Government. The World Federation of Hemophilia (WFH) constitution means that Haemophilia Scotland is not allowed to become a National Member Organisation. However, many people involved with Haemophilia Scotland are individual members of the WFH. As being a member of the WFH is a requirement for joining the European Haemophilia Consortium (EHC), Haemophilia Scotland is not allowed to become a member of that organisation either. However, we are determined not to let these administrative barriers prevent us playing as full a part as we can in the global family of people with bleeding disorders and we regularly engage with the work of both organisations.