Building on previous political advocacy and related activities, the EHC in 2006 initiated an EU Political Advocacy Programme Programme focussing especially on EU stakeholders and building the right platforms to communicate with them. Such platforms include the EHC�s new website which was launched on World Haemophilia Day this year, 17 April 2007, as well as the introduction of EHC Round Tables of Stakeholders to discuss topical issues concerning the EHC.
For more details on the EHC advocacy, please click on the Parliament Meeting and the EHC Round Tables of Stakeholders.
Call for Action of the European Parliament- Rare plasma related disorders
Rare Diseases are rightly seen as a growing European health priority. Both the European Commission and several EU Council Presidencies have held Rare Diseases as a priority area in healthcare policy. Many Rare Diseases cannot be diagnosed or treated. Rare plasma disorders can be diagnosed and successfully treated, but unacceptable diagnosis rates for some plasma disorders means that treatment can only begin late, or not at all. Read more
vCJD & Haemophilia (UK)
The EHC has issued a statement after the announcement by the UK Health Protection Agency that a person with Haemophilia has been found to have evidence of infection with the agent (abnormal prion protein) that causes Variant Creutzfeldt-Jakob Diseases (vCJD).
EHC statement:
Other relevant documents:
Rare Diseases EU consultation: The EHC is involved in the dialogue currently taking place at the EU level on the issue of rare diseases, with a view to raise awareness on the need for comprehensive haemophilia care across Europe. In this perspective, the EHC recently sent a response to the European Commission on its consultation on rare diseases. To see the response, please click here.
Supply of blood and blood products in the EU: On 22 February 2008, the EHC reacted to a letter sent by IFBO to the European Commission on the "sufficiency of supply of blood and blood products within the European Union". To see the letter sent by EHC to the European Commission, please click here.
