Sobi Charity Ride for the European Haemophilia Consortium 2017

Together with a team of Sobi colleagues, I will be cycling about 350 km from Paris to Brussel over three days from Friday 8 to Sunday 10 September in order to raise money for the European Haemophilia Consortium (EHC).

With this endeavor I will take on an effort that is close to or even beyond my maximum physical capability. It will for sure cause me pain and ache for a number of days…It is a symbolic gesture that I do with warm heart and for a very good sake.

About 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.

The EHC actively supports its National Member Organisations (NMOs) at national and European levels, and also helps NMOs to engage with each other, with the objectives of:

• Improving quality of life of people living with rare bleeding disorders,
• Improving diagnostic and treatment facilities,
• Ensuring adequate supply of – and access to – safe factor concentrates,
• Promoting patients’ rights and raising ethical issues,
• Following and influencing developments in European health policy,
• Understanding the status of haemophilia care in member countries through regular surveys,
• Stimulating research in all fields related to haemophilia and related rare bleeding disorders.