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.
This is the third stage of the Sobi Charity bike ride for Haemophilia that started in 2016 from London to Paris, continued in 2017 from Paris to Brussels and now in 2018 we cover the distance from Mainz to Brussels. What is new this year is that EHC and representatives from National Member Organisations (NMOs) will join us for the last 30 km ride to arrive in Brussels where the EHC annual meeting will take place on October 5-7.
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 haemophiliaSobi 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 and has developed a new generation of haemophilia treatments. 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.