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

Belgium Leuven, University Hospitals Leuven» Pediatric unit» 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

Paris, Necker-Enfants malades Universitary hospital» Pediatric unit» Adult unit

Toulouse, Toulouse, University Hospital» Adult unit

Germany Cologne, University Hospital» Pediatric unit» Adult unit

Essen, University Children`s Hospital» Pediatric unit

Hamburg, UKE University Hospital» Pediatric unit» Adult 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

Newcastle, Royal Victoria Infirmary» Pediatric unit» Adult unit

As with other ERNs the work of ERKNET includes :

  • providing a virtual consultancy service to doctors and patients in all Europeans countries
  • improving knowledge about rare kidney disease
  • educating and training*
  • supporting clinical research on diagnosis ,risk prediction and treatments of rare Renal diseases.

* 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. Another entitled “Unravelling the pathophysiology of HUS in light of recent discoveries on complement activation “ presented by Professor Remuzzi is scheduled for 13 November 2018.

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 ERKNET can be found on its website click here      and keep up to date on Twitter @EuRefNetwork