In the UK there are over 30,000 people with a rare genetic bleeding disorder such as haemophilia, Factor VII deficiency, Glanzmann’s or von Willebrand’s.
Medical expertise and knowledge on rare diseases generally is scarce and scattered across borders. People often wait years for a diagnosis and struggle to access the medicines or care they need.
This year’s #RareDiseaseDay theme is ‘Bridging health and social care’; Rare Disease Day 2019 is an opportunity to be part of a global call on policy makers, healthcare professionals, and care services to better coordinate all aspects of care for rare disease patients and families.
As part of our work we are about to launch a UK wide survey to kick start an investigation, working with the All Party Parliamentary Group on Haemophilia and supported by Sobi, into the access to treatment in the UK
The Haemophilia Society with the APPG on Haemophilia and Contaminated Blood has launched an inquiry into the current systems of licensing, procurement, commissioning and prescription of treatments for bleeding disorders in the UK. For more detail visit: https://haemophilia.org.uk/get-involved/campaigning/access-to-care/appg/
Rare Disease Day is for everyone – individuals and families directly affected by rare diseases, caregivers, medical professionals, policy makers, companies, researchers and members of the general public can all get involved to show their support for the global rare disease community.