Documents
Although you will find documents at other places that might be useful for advocacy arguments, you can find here documents related to subjects that don't fit in other topics: contamination of vCJD, plasma products...
Letter (47 KB)to Mr. Barroso and Mr. Kyprianou:
The European Haemophilia Consortium (EHC) is writing to you in response to a letter that the International Federation of Blood Donors Organizations (IFBDO) recently sent to the European Commission and posted on their website, titled “Sufficiency of supply of blood and blood products within the European Union.”
EHC statement on von Creuzfeld Jacob disease (2009) (49 KB)
EMEA: Report of Expert Meeting (270 KB) on Factor VIII Products and Inhibitor Development
Rare diseases treated by plasma proteins. Document (50 KB) written by Brian O'Mahony 2009
For figures on European countries we refer to the surveys presented at 'Data Collection' or at the 'Fact Sheets'
Since the 17th of April 2011 the EHC launched the Advocacy Toolkit. This toolkit is available on request at the 
NMO-office.
As Research and Development (R&D) is a very important issue for rare diseases and as legislation on Orphan Drugs is a high topic, EHC was invited to express its opinion on this matter. Click here to download EHC Orphan Drug Statement (83 KB)
An article on the survey on prophylaxis, published in Haemophilia, written by D. Noone, B. O'Mahony and L. Prihodava: "A survey of the outcome of prophylaxis, ..." (56 KB)
An article on the Swedish HTA, written by A. Farrugia, B. O'Mahony and J. Cassar: 
"Health Technology Assessment and Haemophilia" (75 KB) in 'Haemophilia' (2012) 18, 152-157