EARLS is a non-profit, independent alliance of national patient organizations from various European countries which engages in activities that contribute to raising awareness of Restless Legs Syndrome.

 

EUROPEAN ALLIANCE OF RESTLESS LEGS SYNDROME

ABOUT EARLS

EARLS raises important issues at a European level, issues which are common to all members. Our role as a European patient advocacy group is to promote:

  • Better and more rapid diagnosis
  • Appropriate treatment and care for people with Restless Legs Syndrome (RLS)
  • Improvement of the quality of life of people with RLS and their families
  • Raise public awareness and understanding of RLS among the public, the medical profession and (inter)national policy and decision makers
  • Eliminating prejudice and misunderstanding about RLS
  • Ensure priority given to RLS by policy and decision makers
  • Coordinate/help the efforts of national RLS patient groups throughout Europe
  • Collaborate with the European Restless Legs Syndrome Study Group (EURLSSG)

A brief history of EARLS

At its launch on November 4th, 2009, EARLS had six founding members: Belgium, Finland, Spain, Sweden, The Netherlands and the United Kingdom. Representatives of these countries have been working hard to ensure that EARLS has a serious presence as a European patient organization.

 

While “Restless Legs” may sound rather harmless in theory, it is far more than just a need to move your legs. In fact, approximately 7% of the world's population suffers from Restless Legs Syndrome (RLS). It generally leads to serious sleep disturbance and as a consequence has a significant impact on relationships, working life, health and general quality of life.

 

Today there remains little public awareness of RLS. Even patients themselves often do not know that their discomfort is caused by a neurological disorder. There are many cases where patients do not (dare to) mention their symptoms to their doctors. Those who do go and see their physicians often fail to get help: a recent large study conducted in France, Germany, Spain, UK and USA showed that more than three quarters (76%) of all RLS patients were misdiagnosed. Their treatment as a result was often inadequate or even wrong.

 

In recent years, neurological disorders – in particular those related to the aging population – have received increased attention among policymakers at both EU and national levels. Notwithstanding these developments, there are major neurological conditions of which political awareness remains very limited and RLS can certainly be counted among these. The EU’s influence on questions pertaining to health is growing. The launch of the European Alliance for Restless Legs Syndrome is therefore a timely and long awaited initiative.

The  photograph, taken during a planning meeting in July of 2009, shows representatives of the founding countries, an observer participant (Germany), as well as members of the Board of the European Federation of Neurological Associations who have provided assistance in guiding EARLS through its initial stages.

Left to Right: Paul Whitlock (UK), Susan Pihl (Finland), Mary Baker (EFNA), Beverley Finn (UK), Joke Jaarsma (The Netherlands), Esperanza Lopez Maquieira (Spain), Pentti Fri (Finland), Lilo Maier (Germany, auditor), Sten Sevborn (Sweden), Alistair Newton (EFNA), Peter Reijngoud (The Netherlands).

The EARLS Board Today

Daragh Bogan

-  president  -

UNITED KINGDOM

Joke Jaarsma

-  PAST president  -

NETHERLANDS

Sten Sevborn

- Finance & Controlling -

SWEDEN

EARLS ADVISORY BOARD

Dr.

Birgit Högl

Head of the Sleep Disorders Clinic,

Dept. of Neurology,

Innsbruck Medical University, Anichstr. 35,

A-6020 Innsbruck, Austria

Dr.

Markku Partinen

Vitalmed Oy,

Sitratori 3,

FI-00420 Helsinki,

Finland

Dr.

Claudia Trenkwalder

Paracelsus-Elena Hospital,

Center of Parkinsonism and Movement Disorders,

Klinikstr. 16, DE-34128 Kassel,

Germany

Dr.

K Ray Chaudhuri

Professor of Movement Disorders

Director National Parkinson Foundation Centre of Excellence, King's College, Denmark Hill, London, SE5 9RS, United Kingdom

Dr.

Luigi Ferini Strambi

Director, Sleep Disorders Center, Department of Neuroscience, Università Vita-Salute San Raffaele, Milan,

Italy

Dr.

Jan ULfberg

Institute of Medical Science, Uppsala University,

SE-751 05 Uppsala,

Sweden

Dr.

Roselyne M. Rijsman

Department of Neurology, Sleep Disorders Center Medical Center Haaglanden, Lijnbaan 32,

NL-2501 CK The Hague,

The Netherlands

Dr.

Diego Garcia Borreguero

Sleep Research Institute,

19 Alberto Alcocer,

SP-28036 Madrid,

Spain

One third of RLS patients need pharmaceutical treatment to live a normal life

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EARLS

Phone: +31 61 358 5896

Email: info@earls.eu

©EARLS EUROPEAN ALLIANCE OF RESTLESS LEGS SYNDROME 2016  |