Inauguration - RLS

It gives me great pleasure to welcome you to this first issue of “EARLS News”. EARLS was launched at the European Parliament on November 4th, 2009, on which occasion we presented our aims and objectives and provided general information on Restless Legs and what the countries participating in EARLS have already done at a national level to make this condition better known by the medical profession as well as the general public.
Excellent lectures were presented by three eminent scientists. We were proud to have Dr Karl Ekbom, son of the Dr Karl-Axel Ekbom who gave RLS its name and face, in our midst.

“Restless legs”, it sounds actually rather harmless but this syndrome is far more than just the pressing need to move your legs. Approximately 7% of the world population suffers from Restless Legs Syndrome (RLS). It generally leads to serious sleep disturbance. As a consequence, it has significant impact on relationships, working life, health and quality of life.

Dr Karl Ekbom addressing the European Parliament during the EARLS Launch Event

There is still today 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 of all RLS patients got misdiagnosed (76 %!). 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 – in fact, RLS has not received specific attention among policymakers in the past years, despite growing efforts on neurological disorders and healthy ageing. The EU’s influence on questions pertaining to health is growing. The launch of the European Alliance for Restless Legs Syndrome therefore is a timely and long awaited initiative by European Patient Advocacy Groups.

Dr Partinen and Dr Garcia Borreguero provided convincing evidence to the Europarlementarians present that RLS deserves more attention.

Joke Jaarsma President European Alliance for Restless Legs Syndrome (EARLS)

EARLS, who are we?
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 will have a serious presence as a European Patient Organization.

On this photograph, taken during the last planning meeting in July of 2009, are shown the representatives from the founding countries, one 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. From 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).