Creation and goals of the European Reference Network

On March 2017 were launched 24 European Reference Networks (ERNs) specialised in rare or low-prevalence complex diseases, marking the start of a new era for cooperation in the field of health. The aim was to offer the nearly 30 million EU citizens suffering from these diseases requiring highly specialised treatment, the opportunity to benefit from high-quality and cost-effective care everywhere on the European territory.

In that respect each of the ERNs covers a specific medical field involving healthcare providers located in Europe to facilitate discussion on complex or rare diseases and concentrate knowledge and resources.

The European Reference Network gathering the 24 ERNs and their reference centres, involves more than 900 healthcare units from over 300 hospitals in 26 EU countries.

Creation and goals of the ERN-Skin

The ERN application was born from a joint action of 3 EADV task forces and the FRT Genodermatoses & Rare Skin Diseases Network active in the field for more than 10 years.

After being approved by the Board of Member States, the ERN-Skin began its journey on March 9, 2017 along with the 23 other ERNs. It covers the medical field of rare, complex and undiagnosed skin disorders in children and adults. These conditions are numerous, we count approximately 600 of them, and heterogeneous. Most of them are exclusively cutaneous/sub-cutaneous and often present a severe prognosis, because of the intensity of the cutaneous/mucosal involvement, the risk of cancer for some of them, or the frequent multisystemic involvement directly or secondary to skin damages. The rarity of patients suffering from rare skin diseases and the difference in their aetiologies and clinical features make research and knowledge slow and difficult, leaving many of them without proper diagnosis for their condition or adequate treatments. The purpose of the ERN-Skin is to improve the quality of life of European patients by offering them highly specialised healthcare and support in their daily care while enabling them to remain in their home environment.

In order to successfully fulfill its goals members of the ERN-Skin have to overcome many issues shared by rare and undiagnosed skin disorders such as :

  • Misdiagnosis due to poor skin knowledge among healthcare providers

  • Ignorance regarding the management of skin symptoms

  • Lack of training of paramedical teams for the management of altered skin

  • Poor recognition of the skin alteration as a handicap

  • Poor social integration of patient

  • Life-threatening diseases

  • Chronicity

  • Immunosuppressive treatments leading to many comorbidities

  • Genetic predisposition

Means deployed to fulfill these objectives

A structure fostering a cross-border medical cooperation and the pooling of knowledge :

The governance of the ERN-Skin is thought to ensure maximum geographical and target groups representativity and outreach across the EU.

Coordinators, elected by the ERN-Skin board which administrates the network, are responsible for the day-to-day management of the ERN-Skin and guarantee effective communication and cooperation within the network.

56 reference centres located in 18 different European countries cooperate within the ERN-Skin. Each of them is represented by an Official Representative who has the capacity to decide and act in the name of the centre.

The wide range of rare skin disorders are covered by 9 thematic groups coordinated by one or more chairs.

They are supplemented by sub-thematic and transversal groups aiming to create synergy between them.

The Patient representative Council includes patient representatives in all structures of the ERN who help ensure that the activities of the network reflect the actual needs of patients. They are key pieces of the structure, for they convey the concerns, wishes or suggestions of patients treated by the members of the ERN-Skin.

Innovative medical systems

Every patient, in every European country must benefit from the same degree of expertise regarding their condition, and be able to benefit from the same therapeutic advances. Which is why the experts within and between the thematic groups of the ERN-Skin cooperate everyday through systems like CPMS (Clinical Patient Management System) a secure web-based application to support European Reference Networks in the diagnosis and treatment of rare or complex conditions across national borders, or the development of an e-health platform allowing telemedicine and registries.

Development and spreading of guidelines and best practices

Most of the treatments for rare and complex skin diseases are symptomatic. The pooling of knowledge within the ERN-Skin thus favours the development of guidelines aiming to improve the training of medical staff and paramedics confronted to these rare conditions and offer them theoretical and practical courses.

Multidisciplinary care

The ERN-Skin is committed to offer multidisciplinary care in order to reduce the burden of the patients suffering from rare skin disorders and facilitate the access to extended medical resources (psychological, social, economic and physical).

Maximisation of the cost-effective use of resources

Some disorders require the use of specific medical resources often extremely expensive. By concentrating them where appropriate the ERN-Skin helps optimizing their use and reduce their costs.

Better patient management

To help patients feel acknowledged, the ERN-Skin favours regular interactions between doctors and the Patient Representative Council or other patient groups which enable better communication and listening between doctors and patients.

Public awareness

Helping the patients also goes through the increase of public awareness and access to information related to rare skin conditions, through communication tools like a feature-rich website, newsletters or publications.

Contribution to efficient scientific research and improvement of diagnosis

Ultimately the synergy and cooperation developed by the members of the ERN-Skin help them reach a better understanding of these complex and sometimes overlapping conditions, leading them to improve their diagnosis and contribute to an efficient scientific research with the objective of finding new treatments and regular advances for all patients.