Today is World Haemophilia Day!
World Haemophilia Day is organised by the World Federation of Haemophilia (WFH) and happens on 17th April every year. This year’s theme is “Equitable access for all: recognising all bleeding disorders.”
The WFH’s vision of Treatment for All is for a world where all people with inherited bleeding disorders have access to care, regardless of their type of bleeding disorder, gender, age, or where they live.
It’s been a year since our Needs Assessment report was published which identified the needs of our Scottish bleeding disorders community. You can read our Needs Assessment here. This year we are looking for more volunteers to serve as Haemophilia Scotland Patient Experts. These volunteers would be available to help us by answering surveys, participating in expert forums or discussion groups sharing their experiences on various matters around bleeding disorders.
We have an upcoming opportunity for members to share their views on gene therapy. In particular, if you are considering gene therapy should it become available in Scotland and would be willing to share your views on it, please consider taking part. You can find out more information by contacting our Director, Alan, at alan@haemophilia.scot.
This World Haemophilia Day, we rededicate our efforts to come together and commemorate our community and advance the vision of a world where individuals, regardless of whether they have haemophilia A or B, von Willebrand disorder (VWD), or any other bleeding disorder, can access diagnosis, treatment, and comprehensive care.