EUROPEAN HAEMOPHILIA NETWORK

EUHANET is a project aimed at establishing a network of haemophilia centres to work together on a number of related projects to improve the care of European citizens with inherited bleeding disorders.

PARTICIPANTS
The project will be directed from Sheffield in the UK by Dr Mike Makris. There are five associated partners:

• European Haemophilia Consortium (EHC)
• European Association for Haemophilia and Allied disorders (EAHAD)
• University Medical College Utrecht
• Medical Data Solutions and Services Ltd (MDSAS)
  
• and Fondazione IRCCS Ca’ Granda in Milan

In addition 84 centres from 26 countries have already committed to participating and were part of the original funding application.

FUNDING THE PROJECT
Sixty percent of the funding is provided by the European Commission via its Executive Agency for Health and Consumers (EAHC) and the rest will be raised from industry.

PROJECT DURATION
The project started on 1st June 2012 and will continue until 31st May 2015

EUHANET_^(file.pdf)

EURORDIS is conducting a survey amongst patients and patient representatives on rare disease registries in order to gather their perspective and expectations on this important topic. 

As of December 2012, EURORDIS has received 3500 responses from all over Europe representing hundreds of different rare diseases.  Although the survey is not closed yet, the preliminary results indicate that the vast majority of patients agree that the European Commission should propose legislation to uniformly regulate rare disease registries across Europe.

source: eurordis

Spain’s government declares 2013 the Spanish Year of Rare Diseases