Visions and Goals

Who are we?

The EU-NN is a non profit organization founded on the 9th of February 2008 with the purpose of gaining a better insight into sleep disorders, with special focus on narcolepsy and related hypersomnias by pooling the resources of a variety of centres. Currently, the society consists of over 15 centres in several countries across Europe and is steadily growing in members. The society considers itself completely neutral in political, racial, and religious matters.

What are our goals?

  • To support European scientific research into sleep disorders, in particular into narcolepsy and related hypersomnias
  • To optimise patient care by improving diagnostic and therapeutic options, as well as create a more efficient environment for inter-centre, doctor to patient, and patient to patient communication

In order to realistically and practically attain these two main goals the EUNN created an international database. The database consists of two main parts:

  • A standardised core database (accessible to all members), which includes patient history data and phenotypical characteristics obtained from blood and CSF analysis.
  • A local database (accessible only to individual centres), which can be customised individually to suit the centres specific requests.

As the organisation is non profit, it critically depends on research grants and private sponsorship.

Objective of the association is the promotion of the European scientific research in narcolepsy, hypersomnia, and related fields and the optimization of medical care for patients by improving diagnostic and therapeutic measures. A close co-operation of those involved in treatment, management and research, as well as patients and their family members is to be developed further and will facilitate a fast knowledge and information exchange in the field. Therefore the association wants to contribute to and improve the European information and communication structures and to support the establishment of a standardized patient data base.

The statute's purpose in particular will be carried out by the following measures

  • interaction, collaboration, and integration of European experts in the area mentioned above. Co-operatiosn with European and non-European scientists and scientific organisations, research projects or consortia, that could support the objectives of the association
  • initiation and execution of scientific projects in basic and clinical research as well as research in health care of the areas mentioned above which are not or only partly supported by public organisations or industrial sponsoring
  • organising scientific meetings, seminars, and advanced training activities
  • to provide grants to members and non-members for participation in scientific and educational meetings
  • publication of research results, guidelines, and recommendations for socio- legal aspects and unmet needs
  • cooperation and support with public organisations, patient groups and the pharmaceutical industry