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.
You can share and ease my pain by donating a sum to the EHC. By doing this you will make life a little easier for this group of patients with chronic diseases.
And I have not suffered in vain……
Thank you for your consideration.
Please support EHC by donating a sum of your choice. If you so wish your contribution can be
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.
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. 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.