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Developing a European Reference Network for Rare and Undiagnosed Skin Diseases

On June an application for the creation of a European Reference Netwotk (ERN) in the field of dermatology was submitted to the European Commission (EC).

The ERN-Skin, it is 56 centres of expertise in the field of rare and complex skin diseases from 18 countries gathered in one network to bring highly-specialised, high-quality and accessible healthcare closer to the patients.

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The ERN-Skin has the official endorsement of the 3 main European societies in the field of dermatology:

  • the European Academy of Dermatology and Venereology (EADV);
  • the European Society of Paediatric Dermatology (ESPD);
  • the European Dermatology Forum (EDF).

The ERN-Skin also has the support of Eurordis.

The ERN-Skin application is coordinated by Prof. Christine Bodemer (APHP - Necker Enfants Malades Hospital - Department of Dermatology - MAGEC) with the support of Fondation René Touraine - Genodermatoses & Rare Skin Disorders Network.

The skin is the common organ with the same tools for histological diagnosis and a very specific management requiring a multidisciplinary approach and a set of highly specialised expertise and resources. A thematic dermatological networking, as the ERN-Skin, is highly essential to improve the quality and access of healthcare for patients with rare and complex skin diseases.

European Reference Networks (ERNs), bring together highly specialised healthcare providers from different EU Member States in areas where expertise is rare.

By pooling knowledge and expertise across the EU, they will facilitate access to diagnosis, treatment and provision of affordable, high-quality and cost-effective healthcare in these areas. ERNs will also serve as focal points for medical training and research, information dissemination and healthcare evaluation.

The intention is not to create new providers, but rather to link existing highly specialised providers.

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If you are a EU citizen, you have the right to receive medical treatment in another EU Member State and the right to have your home country cover some or all the costs. Learn more

The ERN-Skin aims at enhancing high-level patient management for patients with rare complex and undiagnosed skin disorders, by improving the quality and safety and access to highly specialised healthcare.

The objectives of the network are:

  • Realise the potential of European cooperation regarding highly specialised healthcare for patients and for healthcare systems by exploiting innovations in medical science and health technologies
  • Contribute to the pooling of knowledge regarding sickness prevention
  • Facilitate improvement in diagnosis and the delivery for high quality, accessible and cost-effective healthcare for all patients with a medical condition requiring a particular concentration of expertise in medical domains where expertise is rare
  • Maximise the cost-effective use of resources by concentrating them where appropriate
  • Reinforce research, epidemiological surveillance like registries and provide training for health care professionals
  • Facilitate mobility of expertise, virtually or physically, and to develop, share and spread information, knowledge and best practices and to foster development of the diagnosis and treatment of rare diseases within and outside the European Reference Networks.
  • Encourage the development of quality and safety benchmarks and help develop and spread best practices within and outside the European Reference Network
  • Help Member States with an insufficient number of patients with a particular medical condition or lacking technology or expertise to provide highly specialised services of high quality.

Rare and Undiagnosed Skin Diseases are numerous and heterogeneous with approximately over 600 conditions. Even though rare and complex dermatological diseases are heterogeneous they can be interconnected and share common management in the care and the field of research.

Given the number of rare and complex skin disorders, a stepwise approach was adopted. The network will first focus on the following groups of diseases:

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The plan is to include in the near future other groups of cutaneous and mucous membrane disorders so that every patient -including the ones suffering from “undiagnosed skin disorders”- can benefit from an appropriate diagnosis and management and also break out their isolation through the development of new patient groups.

The diseases sub-thematic approach is associated with 4 transversal groups to provide common services and tackle shared challenges: training, deep phenotyping, research & registries and clinical outcomes .

The ERN-Skin is coordinated by Prof. Christine Bodemer (APHP - Necker Enfants Malades Hospital - Department of Dermatology - MAGEC) with the support of Fondation René Touraine - Genodermatoses & Rare Skin Disorders Network.

Centre Country Health Care Provider Representative
1 EB Haus Austria Austria Anja Diem, Johann Bauer
2 Ghent University Hospital Belgium Bert Callewaert
3 UZ Leuven Belgium Marie-Anne Morren
4 Cliniques Universitaires de Bruxelles - Erasme Hospital Belgium Veronique Del Marmol
5 University Hospital Centre Zagreb Croatia Branka Marinovic
6 University Hospital Brno - EB Centrum CR Czech Republic Hana Buckova
7 NA Bulvoche Hospital Czech Republic Jana Hercogova
8 St Anna University Hospital - Dpt. of Dermatology Czech Republic Hana Jedlickova
9 Fakultní nemocnice Královské Vinohrady Czech Republic Petr Arenberger
10 Odense University - Dpt. of Dermatology and Allergy Denmark Anette Bygum
11 Zealand University Hospital - Dpt. of Dermatology Denmark Gregor Jemec
12 Helsinky University Hospital - Dpt. of Dermatology, Skin and Allergy Finland Annamari Ranki
13 APHP - Necker Enfants Malades Hospital - MAGEC France Christine Bodemer
14 APHP - Hopital Henri-Mondor Centre for Toxic Epidermal Necrolysis and rare SCARs France Pierre Wolkenstein
15 University Hospital Bordeaux- Centre de Référence pour les Maladies Rares de la Peau (CRMRP) France Alain Taïeb
16 University Hospital Rouen France Pascal Joly
17 University Hospital Toulouse France Juliette Mazereeuww-Hautier
18 University Hospital Nice France Jean-Philippe Lacour
19 University of Freiburg - Center for Skin Fragility & Epidermolysis bullosa Germany Leena Bruckner-Tuderman
20 University Medical Centre Freiburg - Institute for Human Genetics Germany Judith Fischer
21 University Hospital Erlangen Germany Holm Schneider
22 University Medical Centre Rostock Germany Steffen Emmert
23 University of Lübeck - Dpt. of Dermatology Germany Christian Sadik
24 Ludwig-Maximilian University - Interdisciplinary Center for Rare and Genetic Skin Diseases Germany Kathrin Giehl
25 University Hospital of Regensburg - Center for Rare Skin Diseases Regensburg, Dpt. of Dermatology Germany Mark Berneburg
26 Universitätsklinikum Münster (UKM) Germany Vinzenz Oji
27 Städtisches Klinikum Dessau - Dessau Medical Center Germany Christos Zouboulis
28 University Hospital Würzburg Germany Dagmar Presser
29 Semmelweis University Hungary Sarolta Kàrpàti
30 Clinical Center - University of Debrecen Hungary Eva Reymeynik
31 Szent-Györgyi Albert Medical Center, University of Szeged - Dept. Of Dermatology and Allergology Hungary Lajos Kemény
32 Our Lady’s Children’s Hospital Ireland Alan Irvine
33 Azienda USL Toscana Centro Italy Marzia Caproni
34 Fondazione IRCCS Ca’ Granda Ospedale Maggiore Policlinico Italy Susanna Esposito
35 Fondazione Luigi Maria Monti-Istituto Dermopatico dell’Immacolata (IDI) IRCCS Italy Biago Didona
36 Ospedale Pediatrico Bambino Gesù, IRCCS Italy May El-Hachem
37 Azienda Ospedaliera di Padova (AOP) Italy Anna Belloni Fortina
38 Azienda Ospedaliera Sant’Orsola Malpighi Italy Annalisa Patrizi
39 Hospital of Lithuanian University of Health Sciences Kauno Klinikos Lithuania Vesta Kucinskiene
40 AMC Netherlands Raoul Hennekam
41 Erasmus University medical Centre Netherlands Suzanne Pasmans
42 Maastricht University Medical Centre Netherlands Peter Steijlen
43 Academisch Ziekenhuis Groningen (UMCG) - Centre for Blistering Diseases Netherlands Marcel Jonkman
44 Heliodor Swiecicki Hospital, Poznan - Dept. Of Dermatology Poland Marian Dmochowski
45 Dermato-Pediatry Dpt., Bucharest Romania Carmen Maria Salavastru
46 Hospital Sant Joan de Déu and Hospital Clinic Group Spain Maria Asuncion Vicente Villa
47 Uppsala Genodermatoses Centre Sweden Marie Virtanen
48 Barts Health NHS Trust UK Edel O’Toole
49 Birmingham Children’s Hospital NHS FT UK Celia Moss
50 Great Ormond Street Hospital, Foundation Trust UK Veronica Kinsler
51 Guy’s and St Thomas’ NHS Foundation Trust - Dept. Of Dermatology UK Jemima Mellerio
52 Guy’s and St Thomas’ NHS Foundation Trust - Dept of oral Dermatology UK Jane Setterfield
53 Guy’s and St Thomas’ NHS Foundation Trust - UK National Xeroderma Pigmentosum Unit UK Robert Sarkany
54 Scottish Photobiology Service, NHS Tayside UK Sally Ibboston
55 University Hospital of Wales, Cardiff UK John Ingram
56 Leeds Teaching Hospitals NHS Trust UK Ann Morgan
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The Genodermatoses & Rare Skin Disorders Network has been co-funded from 2008 to 2011 by the European Commission as a pilote European Reference Network for Rare Diseases (TAG grant agreement 2007 335).

Since then, the Genodermatoses & Rare Skin Disorders Network develops an inclusive approach to involve in the network experts and centers taking care of patients with rare skin diseases.

The network works in close collaboration with other networks such as EADV Task Forces, Geneskin, EB-Clinet, patient groups and alliances such as Eurordis and also rare diseases organizations such as Orphanet.

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