SHARE CARE CURE “ Good will come together”

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):

ERKNet Reference Centers

Brussels, Cliniques universitaires Saint-Luc – UCL
Leuven, University Hospitals Leuven
Czech Republic
Prague, University Hospital Motol
Helsinki, Children´s Hospital, Helsinki University Hospital
Lyon, Hôpital Femme Mère Enfant & Université de Lyon
Paris, Assistance Publique des Hôpitaux de Paris, Hôpital Henri Mondor, Paris-Est Cre
Paris, Necker-Enfants Malades University Hospital
Paris, Tenon Hospital, Assistance Publique Hôpitaux de Paris
Toulouse, Toulouse, University Hospital
Cologne, University Hospital
Essen, University Children`s Hospital
Hamburg, UKE University Hospital
Hannover, Hannover Medical School
Heidelberg, University Hospital
Münster, University Hospital
Bergamo, Azienda Ospedaliera Papa Giovanni XXIII
Florence, Meyer Children’s Hospital
Genova, Istituto Giannina Gaslini
Milano, Fondazione IRCCS Ca’ Granda Ospedale Maggiore Policlinico, University of Milan
Naples, A.O. Santobono-Pausilipon
Naples, UOC Nephrology and Dialysis – Naples Università della Campania Luigi Vanvitelli
Padova, Azienda Ospedaliera di Padova
Rome, Gemelli Hospital
Rome, Rome, Bambino Gesù Children’s Hospital
Siena, University Hospital
Torino, San Giovanni Bosco Hospital and University of Torino
Vilnius, Vilnius university Hospital Santaros klinikos
Amsterdam, Amsterdam, Academic Medical Center (AMC)
Nijmegen, Radboud UMC
Utrecht, University Medical Centre
Gdansk, University Clinical Centre Gdansk
Barcelona, Barcelona Hospital Universitari Vall d’Hebron
Stockholm, Karolinska University Hospital
United Kingdom
Birmingham, Birmingham Women´s and Children´s Hospital
London, Great Ormond Street Hospital
London, Royal Free Hospital
Manchester, Manchester University Foundation Trust
Newcastle, Royal Victoria Infirmary


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