A meeting of the aHUS alliance is always an opportunity to learn and share news with the aHUS patient community globally.
At its meeting in Nijmegen on 10 November 2018 the alliance was honoured to receive a talk from Tess Harris about the EU’s European Reference Networks ( ERN) and in particular the network relevant to those with kidney disease ERKNet.
Tess Harris guest speaker at the aHUS alliance Nijmegen Meeting
Tess is a leader of the the U.K. charity for those affected by Polycistic Kidney Disease and is an active and highly visible and effective communicator about an illness which she has personal experience of. She has been active in the development of patient involvement in ERKNet and other networks. Tess has contributed to PKD at European and Global levels.
Tess told us that the ERN is a project conceived and funded by programmes of the EU , paid for by member countries, to raise standards of care of rare and complex diseases throughout the countries that make up that Union, and then to share that care in places where it does not exist.
EU states have their own health policies and funding arrangements, usually of a social insurance nature , but this rare disease project sits over the top of that . EU Directives have set out the framework for the project, and ,after several years from conception through development , it was formally launched on Rare Disease Day 2017.
There are 24 disease based Networks within the ERN including one for rare kidney diseases called ERKNET . ERKNet includes aHUS which comes within a thematic cluster of Thrombitic Microangiopathies or TMAs.
Having outlined the purpose of networks Tess explained the structure of ERKNet . Its lead coordinator is Professor Franz Schaefer of University Hospital of Heidelberg Germany . It has a Network Advisory Board supported by a Network Secretariat . The day to day activities are overseen by a Network Executive Board.
The Executive Board is made up from the Lead Coordinator and representatives from the nine thematic work groups of which as previously stated TMA is one . It also includes a patient representative from something called EPAG . EURORDIS has been active in the development of European care for Rare Diseases , being an organisation of rare disease patient organisation and the patient voice plays a part in this project. It is through EPAG that “ patients interface”with and influence the direction of ERKNet.
Tess is an important member of the EPAG , as is Claudia Sproedt.
Alongside the 9 thematic workgroups , there are six cross theme task groups tackling specific shared nephrology topics.
There are now 38 hospitals in 12 countries which have been approved as reference centres of which 27 in 9 countries have a recognised expertise in TMAs, including hopefully aHUS . See the list of hospitals below. aHUS patient have the right to cross border consultations on their disease if they ask for it.
ERKNet was launched on Rare Disease Day with it must be said little awareness in the aHUS patient community . It was news to the aHUS alliance when it discovered it had reached its first anniversary at which point the alliance wrote about it on its website , see here.
The alliance delegates learned much from Tess’ presentation. ( copies of her slides will be available here in due course)
Sadly despite Tess’s much appreciated address ,the TMA group communication deficit perceived by the alliance continues to be the case ,as the aHUS patient’s representative on the TMA thematic work group refused an invitation to attend the alliance meeting in Nijmegen. Sometimes the cultural differences become apparent in patient advocacy and those from Mediterrean countries may appear to not favour inclusiveness and collaboration as much as advocacy groups like the aHUS alliance which is more global in its communications both in listening to aHUS patients and sharing what it knows with them. This “aHUS page” from FEDERG’s. website perhaps illustrates these differences ( click here)
The aHUS Alliance has attended two webinars by ERKNet of interest to the aHUS community and reported on them for all to see.
So although the alliance cannot be a part of it , it supports ERKNet ,because irrespective of any political dimension , at its heart this network is a collaboration in the interests of aHUS patients and deserves to flourish and succeed particularly for those patient in European countries not as fortunate as those in France, Italy , Germany,The Netherlands and the UK.
TMA Centres approved by ERKNet with direct links to the hospitals ( those in red are not approved TMA reference centres):
|Brussels, Cliniques universitaires Saint-Luc – UCL||» Pediatric unit» Adult unit|
|Leuven, University Hospitals Leuven||» Pediatric unit» Adult unit|
|Prague, University Hospital Motol||» Pediatric unit|
|Helsinki, Children´s Hospital, Helsinki University Hospital||» Pediatric unit|
|Lyon, Hôpital Femme Mère Enfant & Université de Lyon||» Pediatric unit|
|Paris, Assistance Publique des Hôpitaux de Paris, Hôpital Henri Mondor, Paris-Est Cre||» Adult unit|
|Paris, Necker-Enfants Malades University Hospital||» Pediatric unit» Adult unit|
|Paris, Tenon Hospital, Assistance Publique Hôpitaux de Paris||» Adult unit|
|Toulouse, Toulouse, University Hospital||» Pediatric unit» Adult unit|
|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» Adult unit|
|Heidelberg, University Hospital||» Pediatric unit|
|Münster, University Hospital||» Pediatric unit|
|Bergamo, Azienda Ospedaliera Papa Giovanni XXIII||» Adult unit|
|Florence, Meyer Children’s Hospital||» Pediatric unit|
|Genova, Istituto Giannina Gaslini||» Pediatric unit|
|Milano, Fondazione IRCCS Ca’ Granda Ospedale Maggiore Policlinico, University of Milan||» Pediatric unit|
|Naples, A.O. Santobono-Pausilipon||» Pediatric unit|
|Naples, UOC Nephrology and Dialysis – Naples Università della Campania Luigi Vanvitelli||» Pediatric unit» Adult unit|
|Padova, Azienda Ospedaliera di Padova||» Pediatric unit» Adult 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|
|Vilnius, Vilnius university Hospital Santaros klinikos||» Pediatric unit» Adult unit|
|Amsterdam, Amsterdam, Academic Medical Center (AMC)||» Pediatric unit|
|Nijmegen, Radboud UMC||» Pediatric unit» Adult unit|
|Utrecht, University Medical Centre||» Pediatric unit» Adult unit|
|Gdansk, University Clinical Centre Gdansk||» Pediatric unit» Adult unit|
|Barcelona, Barcelona Hospital Universitari Vall d’Hebron||» Pediatric unit|
|Stockholm, Karolinska University Hospital||» Pediatric unit» Adult unit|
|Birmingham, Birmingham Women´s and Children´s Hospital||» Pediatric unit|
|London, Great Ormond Street Hospital||» Pediatric unit|
|London, Royal Free Hospital||» Adult unit|
|Manchester, Manchester University Foundation Trust||» Pediatric unit» Adult unit|
|Newcastle, Royal Victoria Infirmary||» Pediatric unit» Adult unit|