London-Paris Bike Ride for the European Haemophilia Consortium
Fundraising campaign by
Marijn van der Sluijs
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£365.00raised of £500.00 goal goal
No more donations are being accepted at this time. Please contact the campaign owner if you would like to discuss further funding opportunities
Campaign Story
Together with a team of Sobi colleagues, I will be cycling about 380 km from London to Paris over three days from Friday 26 to Sunday 28 August in order 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.
About haemophilia
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 part of 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.
Organizer
- Marijn van der Sluijs
- Campaign Owner
- Sollentuna, SE
Donors
- Carin Junestrand
- Donated on Aug 30, 2016
Congrats! Well done
- Lisa McCloskey
- Donated on Aug 30, 2016
Congratulations!!!
We made it!
Update posted by Marijn van der Sluijs at 09:16 amHappy and proud to have completed the long ride with a great team!
Bike and kit ready!
Update posted by Marijn van der Sluijs at 06:41 pmBike bag did a good job and so did I in putting the bike back together again.
Donors & Comments
- Anna Lawson
- Donated on Aug 31, 2016
Great work to everyone for completing the bike ride - huge achievement!!
- Carin Junestrand
- Donated on Aug 30, 2016
Congrats! Well done
- Lisa McCloskey
- Donated on Aug 30, 2016
Congratulations!!!
- Marijke Leenders
- Donated on Aug 29, 2016
Congratulations! Very proud of you!
- Erik Brouwer
- Donated on Aug 29, 2016
- Anonymous
- Donated on Aug 25, 2016
- Åsa Lindelöf
- Donated on Aug 25, 2016
Go Marijn!!
- Maaike Janssen
- Donated on Aug 25, 2016
Veel plezier en succes!!!! Erg impressive!
- Katrin Andrén
- Donated on Aug 18, 2016
Good Luck Marijn!!
- Fabrizio Papa
- Donated on Aug 18, 2016
Happy to support! Good luck Marijn
Great work to everyone for completing the bike ride - huge achievement!!