‘Hemophilia Stories’ is the result of a creative partnership between Goran Kapetanovic, the European Haemophilia Consortium and some of their national patient organisations.

About Goran Kapetanovic

Born December 12, 1974 in Sarajevo

EDUCATION: University College of Film, Radio, Television and Theatre with a Major in Film Directing. Dramatiska Institutet. History of art, Lunds University.

Goran Kapetanovic studied film direction at the dramatic Institute in Stockholm. His last four films have been rewarded with 23 international awards, amongst others: Shortlisted for the Oscars for Kiruna-Kigali, Best foreign drama, Toronto short film festival , Best European Short Film, Sedicorto International Film Festival, Best narrative short, Montreal Black Film Festival, KanadaBest Foreign Drama – Intl. Student Film Festival, Hollywood, USA, Uppsala Film Jackdaw for Best Children’s Film.

Between 2005 – 2010 Goran worked as a producer and mentor with workshops for SIDA and SI in Kigali, Rwanda where films were made together with people from Rwanda Film Centre. The films premiered at Tribeca Film Festival 2007.

About the European Haemophilia Consortium

The European Haemophilia Consortium (EHC) is a non-profit, non-government umbrella organisation representing 45 national patient organisations of people with haemophilia, von Willebrand Disease and other rare bleeding disorders – approximately 90,000 people – from 27 EU Member States and most Member States of the Council of Europe. Its mission and objectives are to:

  • Improve the quality of life of people living with a rare bleeding disorder,
  • Improve diagnostic and treatment facilities,
  • Ensure adequate supply of – and access to – safe factor concentrates,
  • Promote patients’ rights and raise ethical issues,
  • Follow and influence developments in European health policy,
  • Understand the status of haemophilia care in member countries through regular surveys,
  • Stimulate research in all fields related to haemophilia and other rare bleeding disorders.

About haemophilia and other rare bleeding disorders

‘Bleeding disorders’ is a generic name for a group of disorders that affect the ability of an individual’s blood to clot; these disorders include haemophilia A, haemophilia B, von Willebrand Disease (VWD) and rare bleeding disorders (RBD) and can present themselves in a severe, moderate or mild form. If given access to adequate treatment, people with bleeding disorders can lead normal and fruitful lives. However, poor access to treatment can have drastic consequences on the individuals themselves as well as on their families and caregivers. Bleeds that are not properly managed can lead to severe disability and even death (e.g. if bleeding occurs in the brain). All bleeding disorders are classified by the European Union as ‘rare diseases’ because they affect less than 5 people in 10,000.

Resources

European Haemophilia Consortium
www.ehc.eu

World Federation of Hemophilia
www.wfh.org

European Association for Haemophilia and Allied Disorders
www.eahad.org

European Haemophilia Network
http://www.euhanet.org

For more information please contact the EHC at:

Rue de l’Industrie 10
B-1000 Brussels
Belgium

+32 893 24 70
office@ehc.eu

The ‘Hemophilia Stories’ project was made possible by an unrestricted funding from Sobi.