For my 40th birthday, rather than presents I'm asking my friends to donate a few quid to my favourite charity, the European Haemophilia Consortium.
Together with a team of Sobi colleagues, I will be cycling about 390 km from Mainz to Brussels over three days from Tuesday 2 to Thursday 4 October in order to raise money for the European Haemophilia Consortium (EHC). The funds are used to support projects for increased physical activity and an active life style for haemophilia patients.
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.
About Sobi in haemophilia
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. Sobi’s history of innovation in haemophilia is the foundation for our pioneering research today and for our long-term commitment in supporting the haemophilia community.