Together with a team of Sobi colleagues, I will be cycling 350 km from Paris to Brussels over three days from Friday 8 to Sunday 10 September in order to create awareness of, and raise money for, the European Haemophilia Consortium (EHC).
The EHC is a non-profit organisation that works on improving the quality of life of people living with rare bleeding disorders and promoting patients rights. Working with haemophilia I realise the important work that EHC does and hopefully this cycle ride can contribute in a small way.
Please support the EHC by donating an amount of your choice using the link below!
About the EHC
The European Haemophilia Consortium (EHC) is an international non-profit organisation that represents 45 national patients’ organisations of people with rare bleeding disorders from 27 Member States of the European Union (EU) and most Member States of the Council of Europe. The EHC represents approximately 90,000 people diagnosed with a rare bleeding condition such as haemophilia, von Willebrand Disease (VWD) and other rare bleeding disorders across Europe. However, it is estimated that many more live with an undiagnosed rare bleeding disorder.
Haemophilia is a type of bleeding disorder in which the blood does not clot properly. When a person with haemophilia bleeds it takes longer than normal for the bleeding to stop. This is because people with haemophilia don’t produce enough of an important protein that helps the blood to clot, called a ‘clotting factor’. Haemophilia is a rare disease that is usually inherited and is more common in males than females.
Sobi Haemophilia is part of Sobi, a specialty pharmaceutical company based in Stockholm, Sweden. We want to contribute to a world where all people with haemophilia are diagnosed and receive effective treatment and life-long support to live a full life, free from limitations. Since 2006, Sobi has been working with Bioverativ to develop and advance haemophilia care.