An anniversary passed just over a week or so on Rare Disease Day, with very little awareness in the aHUS /Renal community.
It is little known by aHUS patients, but there is consortium of 38 hospital expert centres in 12 European countries which has been created to provide advice and help improve the healthcare for those with the challenge of rare renal diseases.
Known as the European Reference Network for Rare Kidney Diseases, or ERKNET, and is one of 24 ERNs launched following Rare Disease Day 2017.
The following hospitals in 8 of these countries have declared an expertrise for rare kidney diseases mediated by TMA, including aHUS. ( Also MPGN/DDD and HUS)
Belgium Brussels, Cliniques universitaires Saint-Luc – UCL» Adult unit
Czech Republic Prague, University Hospital Motol» Pediatric unit
Finland Helsinki, Children´s Hospital, Helsinki University Hospital» Pediatric unit
France Lyon, Hôpital Femme Mère Enfant & Université de Lyon» Pediatric unit
Toulouse, Toulouse, University Hospital» Adult unit
Essen, University Children`s Hospital» Pediatric unit
Hannover, Hannover Medical School» Pediatric unit
Heidelberg, University Hospital» Pediatric unit
Münster, University Hospital» Pediatric unit
Italy Bergamo, Azienda Ospedaliera Papa Giovanni XXIIIunit
Milano, Fondazione IRCCS Ca’ Granda Ospedale Maggiore Policlinico, University of Milanunit
Naples, A.O. Santobono-Pausiliponunit
Padova, Azienda Ospedaliera di Padova» Pediatric unit
Rome, Gemelli Hospital» Adult unit
Rome, Rome, Bambino Gesù Children’s Hospital» Pediatric unit
Siena, University Hospital» Adult unit
Torino, San Giovanni Bosco Hospital and University of Torino» Adult unit
LithuaniaVilnius, Vilnius university Hospital Santaros klinikos» Adult unit
Netherlands Nijmegen, Radboud UMC» Pediatricunit
Utrecht, University Medical Centre» Pediatric unit
United Kingdom Birmingham, University Hospital» Adult unit
London, Great Ormond Street Hospital» Pediatric unit
London, Royal Free Hospital» Adult unit
As with other ERNs the work of ERKNET includes :
* ERKNET facilitates a regular programme of webinars throughout the year. A webinar titled “spectrum of complement mediated thrombotic microangiopathy after kidney transplant” will be of interest to aHUS patients. It is scheduled for 18 September 2018 ,just a few days before aHUS Awareness Day.
ERKNET is also establishing a Patient Registry. Supported by a grant of nearly €400k from the EU. Although it is early days two patients have already been recruited to the TMA cohort , although it is not known if these are aHUS patients or not.
Very little is known about the way patients are included in the operation of the network, particularly for aHUS patients, which after 12 months appears to be a communication deficit ; but maybe this article will go some small way remedying that. But more needs to be done.
It is welcoming to know ,however , that the ERKNET website has a link to the aHUS alliance website from which aHUS patients can learn about the diseases from a global perspective. There are also links on the ERKNET website to patient information in Dutch and German for those wanting to know more about aHUS/TMA.
A key part of the alliance’s mission is to work with international aHUS research networks. Although it is not solely an aHUS network it is one that the alliance can support . aHUS within the context of TMA is something that the alliance fully understands as its conference in Boston last year fully demonstrates. (Click Here for more info on TMA Boston) It is very much in the interest of aHUS patients.
More information about ERK can be found on its website click here and keep up to date on Twitter @EuRefNetwork