World Haemophilia Day 2014 – Speak Out : Create Change
The theme of this year’s World Haemophilia Day is Speak Out : Create Change. It is a very important message. An estimated 1 in 1000 people have a bleeding disorder; close to seven million men, women and children around the world, but 75 per cent of them don’t know it and receive little or no treatment. Since its inception in the late 1960s, the World Federation of Hemophilia (WFH) has been working steadily to improve those numbers and its vision is to provide treatment for all people with inherited bleeding disorders, no matter where they live. You can make a donation directly to WFH to support their work or, to provide longer term support, why not consider becoming a member?
One of the most effective tactics that WFH has used is to work with the patient organisations in each country so that we have a stronger and more effective voice with Government. There work has shown that strong and active patient organisations lead to better treatment and care. This is one of the reasons why one of the three main areas of the work of Haemophilia Scotland is advocacy. We engage with a wide range of professionals, politicians and decision makers to make sure that the interests of people with bleeding disorders in Scotland are never overlooked. To highlight this work, and mark World Haemophilia Day, we are honoured to be the guests of the Highland Council Provost for a Civic Reception this Saturday (there are still some tickets left if you’d like to come). As well as raising awareness of the work of the WFH and Haemophilia Scotland we will be promoting an exciting new play about the contaminated blood disaster, Factor 9 which is at the Eden Court Theatre in Inverness later that night as part of it’s first tour. This production is a fantastic example of people with bleeding disorders speaking out to create change. If you would like to support plans to bring the play to the Edinburgh Fringe there is a Kickstarter funding appeal to raise the necessary funds.