A few years ago a Rare Disease organisation in the UK had this to say about Expert Centres or Centres of Excellence as it called them.
“”What is a Centre of Excellence” is a question we are hearing more often. Results show that many people are unsure whether the centre they attend is a Centre of Excellence , and are unaware of what such centres are and what types of service they provide.
This confusion and lack of clarity is exacerbated not only by the lack of uniform definition of these centres in the UK and across Europe, but also by the range of official terms for a centre , such as “Centre of Reference” , “Centre of Expertise” , “Reference Centre” and “Expert Centre”…. a centre can be “virtual” with a network of experts across different hospitals or “physical” within their own building”
Such lack of clarity still exists as far as aHUS Expert Centres are concerned and most aHUS patients know very little about such centres.
The aHUS alliance itself is not clear about them either and so has decided to embark on a tour of a small number of aHUS Expert Centres in Europe ( hopefully others elsewhere in the world will follow).
The alliance begins its journey to shed light on aHUS Expert Centres later this week with a visit to Dr Veronique Fremeaux- Bacchi ‘s team at the Hopital Europeen George Pompidou in Paris. The next day the alliance will be in Newcastle Upon Tyne to visit the National Renal Complement Treatment Centre led by Professor David Kavanagh.
The following week the alliance will be in Italy. First of all to visit Professor Giuseppe Remuzzi and his team at the Mario Negri Institute in Bergamo; and finally Milan where Dr Gianluigi Ardissino and his team at the Centro per la Cura e lo Studio della Sindrome Emolitico Uremica will be the alliance’s hosts.
These four centres are headed by four of the world’s most eminent aHUS researchers and authorities.
The alliance will also meet up with alliance affiliate representatives Nicolas Mullier of AIRG France and Paulo Chiandotto of Progetto Alice onlus SEU.
The alliance intends to post news about the Study Tour as it progresses and provide a summary report eventually.