Yesterday (17 April) was World Haemophilia Day. Our sister organisations all over the world were marking the day with an amazing range of activities.
Here at Haemophilia Scotland, we like to use World Haemophilia Day to raise the profile of bleeding disorders in Scotland and of the work we are doing to improve treatment and care in the rest of the world.
This year we are launching our Diagnose Malawi Appeal and are raising awareness at science festivals.
Diagnose Malawi Appeal
We are working in partnership with the Society of Haemophilia and Allied Disorders (SHAD) in Malawi to improve diagnosis, treatment, and care in their country.
All over the world 1 in 10,000 babies is born with Haemophilia A. However, despite having a population of well over 16 million there was nobody in Malawi with a laboratory diagnosed bleeding disorder when the project started.
We have received funding from the Scottish Government to run the Malawi Diagnosis Project with SHAD. There will be a public awareness campaign in Malawi, and training for hospital staff, to try and find suspected cases of bleeding disorders. New clinics will then offer testing, and where appropriate, treatment.
As part of our funding application we pledged to raise some of the money we need through community fundraising. Money spent on this project goes a long way. For example, running a single test will cost £15. By the end of the project we hope that between 216 and 360 people will have been tested. Our first fundraising target of £1,500 is the equivalent of paying for the first 100 test. However, your money will be used to support the whole project.
The easiest way to donate to the appeal is on Just Giving. Alternatively, you can donate fifteen pounds by texting ‘MALA31 £15’ to 70070. If you’d like to give a different amount just change the amount in your text. We will be posting more about the project during our ‘Malawi May’ when there will also be a cultural event to find out more about the county we are working with.
Following the success of Walk RED Malawi last year there will be another event this year. Details are being finalised. Please put the 17th of July in your diary. If you are interested in finding out more please email Emma Black to be put on the Walk RED Malawi mailing list.
To raise awareness of bleeding disorders in Scotland we have been taking part science festivals. We worked with Blackwell’s Bookstore to run a very successful crime scene investigation event as part of the Edinburgh International Science Festival. All day, amateur sleuths were cracking clues to solve a murder, while improving their knowledge of bleeding disorders.