As part of its continues efforts to improve the quality of life of people living with rare bleeding disorders throughout Europe, the European Haemophilia Consortium (EHC) has developed and launched the Procurement of Affordable Replacement Therapies – Network of European Relevant Stakeholders (PARTNERS) programme. One of the main goals of the project is to increase access to replacement therapies in European countries that provide little or no such treatment to their haemophilia patients. Over 5000 people with haemophilia can benefit from the programme.
Through systematic data gathering and close work collaboration with its national patient organisations, the EHC has long been monitoring the level of haemophilia care throughout Europe. Though there have been improvement in many areas, disparities in access to treatment and quality of care for people with haemophilia is still evident between many countries. As the community is well too aware of, differences in access to treatment means very different outcomes for patients. The PARTNERS programme is an approach to the sustainable procurement of treatment products for haemophilia A and haemophilia B in countries located both inside and outside of the European Union.
In the time period of carrying out the projects’ objectives, the EHC would also, utilising the structures established or optimised in each country for this programme, work to improve access to comprehensive care and better organisation of care by encouraging and supporting the certification of comprehensive care and treatment centres, the establishment of national haemophilia committees, the promulgation of national treatment protocols and encouraging equality of access to treatment inside each country.
For detailed information on the programme, please reference the following documents:
Endorsement of PARTNERS programme from other organisations:
European Patient Forum (EPF) – Endorsement letter
EURORDIS – Rare Diseases Europe – Endorsement letter
All documents can also be found and accessed in the library section.