Founded/Established in and Short synopsis of aims and objectives
EARLS is a non–profit independent alliance of national Restless Legs Syndrome (RLS – also known as Willis Ekbom Disease) European patient organizations. Launched in November 2009, EARLS had six founding members: Belgium, Finland, Spain, Sweden, The Netherlands and the United Kingdom. France, Norway and Austria have now also joined.
EARLS raises important issues at a European level. Our role includes promoting:
- Better and more rapid diagnosis
- Appropriate treatment and care for people with RLS
- Improvement of quality of life for RLS patients and their families
- Awareness and understanding of RLS among the public, medical professionals and policy and decision makers
Major achievements/ongoing work
Soon after its formation, the EARLS Board began to take an inventory among its member states of the level of illness, quality of life and awareness amongst the medical profession of RLS. This resulted in a major report in 2011, which attracted the attention of the sister patient organizations in the USA and Canada, where the study was subsequently also carried out. In the end, the detailed questionnaire was sent to 11,731 members of RLS patient organizations in Austria, Belgium, Finland, France, United Kingdom, Italy, Norway, Spain, Sweden, The Netherlands, Canada and the USA. 4,107 questionnaires (35.0%) were analysed. The final combined report was issued in 2012/13, and presented at the World Association of Sleep Medicine in Valencia in 2013.
The study indicated that time from diagnosis to treatment was in many cases very long, with patients having to consult with many doctors on their treatment journey, that awareness of RLS among family doctors left much to be desired, that there was a high percentage of sick leave and even disability benefit which could be attributed to RLS and that prescribed medications were in many cases inappropriate or prescribed at doses that were too high. Not only did this indicate that diagnosis and treatment pathways needed to improve, it also showed that there was much to be gained through raising more awareness of RLS.
Outline of plans for 2017 – focus on major awareness day or activity
In the meantime, the EARLS Board had continued its work on other fronts and explored what was happening in Europe for neurological patients. EARLS joined EFNA in 2011, and soon realized that speaking with one voice is of extremely high importance for neurological patients. Through its EFNA activities EARLS now also participates in EAN work, and all this has led to much greater visibility of RLS.
In 2015 EARLS submitted a proposal for inclusion in The Value of Treatment (VOT)/The Cost of Non-Treatment Project. The proposal was accepted and adopted by both the EAN and the EURLSSG (European RLS Study Group). The results of the study show that RLS is the second most expensive neurological disease in Europe (after dementia).
Poster economics here
On 23 September, EARLS and its members each year mark International RLS Awareness Day, this day being Karl Ekbom’s birth date. Karl Ekbom was the Swedish neurologist who first gave this disease its name. This year a major publicity campaign was organized in all EARLS countries with the aim of emphasizing the urgent need for more awareness of and more research into this disease in order to reduce patient suffering and the high cost resulting from the lack of awareness for society as a whole. The results of the VOT study were central to all these activities.
Statement of importance of working with physicians(/EAN) and comment on what a patient organisation – such as EARLS – can bring to a scientific panel.
EARLS participate in the Sleep Panel at EAN as well as in the EAN Education Committee. EARLS Board members also are represented in the European RLS Study group. These activities help us to become more empowered patient advocates. It is EARLS’ desire to continue to be involved on an ongoing basis. Communication and discussion between RLS stakeholders to champion collaboration that directly benefits both the scientific and the patient communities is essential to our work.
You can find out more about who we are and who we represent here:
Should you wish to know more, please get in touch with:
Ms Joke Jaarsma; contact: Joke.firstname.lastname@example.org
Or visit our website at: http://www.earls.eu
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