Welcome to World Haemophilia Day
Today is World Haemophilia Day. It is a day where we hold events to promote understanding and awareness of bleeding disorders. We do this while raising much needed funds for The Haemophilia Society to support our campaigning, events and services.
This year’s theme
This year, as well as raising awareness and fundraising using the colour RED. We are also promoting the World Haemophilia Day theme that sharing knowledge makes us stronger.
The global bleeding disorders community is filled with the first-hand knowledge and experience needed to help increase awareness and improve access to care and treatment.
Our latest projects
Today we are launching two projects to enable our members to share their experiences of their care and treatment. This will help others to understand what they can expect and that they aren’t alone. We also want the people and systems that provide care and treatment to our members to learn from the experiences of people with bleeding disorders.
In our first project we want to understand how families feel when they are initially diagnosed with a bleeding disorder. For some families there is a known family history of bleeding disorders and they will have carefully planned the birth of their child, taking this into account. For others, it can take years to diagnose and begin providing the best treatment. We want to document and learn from these experiences.
Our second project is to describe best practice and areas of improvement for treatment of people with bleeding disorders in emergency settings. What can we learn from the times it has gone well as well as the times it hasn’t? We will study how people with all bleeding disorders are treated when they need to call an ambulance or arrive at A&E.
Over to you
Your first-hand experience is needed to improve access to treatment and ensure the best care for all people with bleeding disorders in the UK. If you want to share your experiences of initial diagnosis and emergency care please get in touch with us on 0207 939 0780, [email protected], post below or contact us via Facebook.
What else can you do to help raise awareness and funds
You can #wearRED to school, work, clubs and social events. You could #bakeitRED by organising a cake sale. How about holding a sponsored walk and #walkRED? Or get you and friends to paint their nails and #paintitRED.
Text HSUK18 £4 to 70070 to donate to The Haemophilia Society and make a difference today.
For a fundraising pack email us on [email protected]