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.
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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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:
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|
|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|
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.
on rare skin diseases
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