On Friday 26 Aug 2016 I and several colleagues from Sobi will get on our bikes in London heading for Paris. After 377 km we will arrive at the Eiffel Tower on Sunday 28 Aug. Why, you ask? To raise money for the European Haemophilia Consortium (EHC).
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 rare congenital bleeding disorder that occurs in people with a limited amount of either clotting factor VIII (haemophilia A) or clotting factor IX (haemophilia B). Having haemophilia means that an individual’s body cannot naturally stop the bleeding that occurs once a blood vessel is damaged. These bleeds can be caused both by trauma and stress. If the bleed is not stopped and properly managed it can result in damages to the joints (such as ankles, hips and knees), which can cripple an individual (to the extreme an individual is at risk of losing limbs such as legs and arms) and limit his or her range of movements. Furthermore, intracranial bleeds can be both debilitating and fatal.
About Sobi in haemophilia
Sobi Haemophilia is a part of Swedish Orphan Biovitrum AB (Sobi), a specialty pharmaceutical company based in Stockholm, Sweden. We have a history of innovation in haemophilia that stretches back more than 50 years. Today, we continue to build on that history through a global partnership with Biogen, an American biotechnology company, to provide new treatments for haemophilia.