EARLS advocates at a European level and we regularly attend seminars and RLS events to promote awareness of RLS among the public and medical practitioners. Find the latest RLS news, updates of our work, events and activities here.

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Brain Awareness Week 2017, Outreach Event, Strasbourg

MAY, TWENTY-SEVENTEEN

We are pleased to announce the release of a new video on our YouTube channel, about the Brain Awareness Week Outreach event held at the European Parliament in Strasbourg on 16th March 2017.

 

The title of the event: "Expanding Brain Research in Europe: A societal Need?" prompted excellent debate and discussion among the speakers and audience throughout the meeting. Key speakers included: Monica Di Luca (Vice President of EBC, and President of FENS), Marion LeBoyer (Professor of Psychiatry at the University of Paris) and Ann Little (President of The European Federation of Neurological Associations, EFNA, deputising for Joke Jaarsma.

Value of Treatment (VoT) Project

FEBRUARY, TWENTY-SIXTEEN

RLS has been included in a major large study to be undertaken by the European Brain Council and the London School of Economics. A working group of RLS experts has been formed; the group will collaborate with EBC/LSE. The purpose of the study will be to first of all analyse the cost of non-treatment of RLS (late diagnosis, wrong treatment/medication, absence from the workplace etc).

 

The European Brain Council (EBC) held a kick-off meeting for its project on the Value of Treatment for Brain Disorders (VoT) on 27 January, at the University Foundation in Brussels.

 

We will keep you informed of developments!

EARLS General Assembly Meeting, Brussels, February 2016

FEBRUARY, TWENTY-SIXTEEN

The EARLS members met at the General Assembly in Brussels to discuss the many issues at stake. Major development was the handover of the Presidency. After six years the term of office of the sitting president – Joke Jaarsma – was finished. Daragh Bogan of the UK group has now taken over.

EARLS welcomes Austria as a new member!

JANUARY 15, TWENTY-SIXTEEN

EARLS welcomes the Austrian RLS patient Advocacy Group as its new Member. We look forward to working with Mrs Waltraud Duven , Chair of the Group.

Stigma and neurological illness, the patient experience

OCTOBER 14, TWENTY-FIFTEEN

On October 14th 2015 the first part of a patient study in which many RLS patients in Europe participated was presented in the European Parliament. The first part of the study, analysed by Professor Matilde Leonardi from Milan, Italy, was about "Stigma and neurological illness, the patient experience".

 

A total of 4847 patients took part in the study from a variety of illnesses: headache/migraine, MS, ME, epilepsy, poliomyelitis, ataxia, Huntington disease, and others. Out of the total number of questionnaires, no less than 1368 (28.2%!!) were from RLS patients. Once again a clear indication that RLS patients have a story to tell.

 

57% of all patients felt that they had experienced stigma at one stage or another, at work, socially, and generally speaking. Four diseases were dominant in this respect: RLS, MS, ME and headache.

 

Having these data presented in the European Parliament, with many members of the Parliament as well as people from science and industry, present, was important for RLS awareness.

Celebrating the 1st EAN Congress: Public Awareness Day – Meet the Experts

AUGUST 01, TWENTY-FIFTEEN

On Sunday, June 21, 2015, a Public Awareness Day was organised around the theme Diagnosing, Treating and Managing Headache and Sleep Disorders at the Neurology Lecture Hall in the Alte Nervenklinik at the Charité Campus. The meeting was a joint initiative by EAN and EFNA, the European Umbrella Patient group for neurological illness. In spite of the good weather on this Sunday afternoon, some 40 people attended the meeting.

 

The afternoon was moderated by Professor Wolfgang Oertel. After the opening by Professor Günther Deuschl, President of EAN, the topics headache and Restless Legs Syndrome (RLS), and how these can be diagnosed, treated and managed effectively, were presented: Prof. Uwe Reuter spoke about the various forms of headache, their causes and triggers, possible treatment, and coping tips. Professor Claudia Trenkwalder presented the case of restless legs syndrome, the symptoms, cause and treatment.

 

For both topics, patients had been invited to talk about how they managed their conditions, and how these disorders had greatly impacted on their home, work and social lives: Jakob Terhaag, Cluster Headache Patient and Dr Hartmut Stoye, Restless Legs Patient.

 

Following the peronal testimonies a lively general discussion was led by Professors David B. Vodušek and Wolfgang Oertel. The severity and high prevalence of RLS was highlighted. The Restless Legs case was emphasised by showing that in Germany out of 10,000 medical students leaving university each year, less than 20 write their thesis about RLS; that at a recent (2015) movement disorders meeting with some 5,000 delegates there was not a single main lecture addressing the topic RLS; and that among general practitioners there is very little knowledge of augmentation, the main side effect of the dopamine agonists. He made a strong plea for especially Restless Legs patients to be active in asking for attention for their disease, from their own GP’s but also from their local and European politicians.

SEE THE ORIGINAL ARTICLE

Rights and benefits the EU brings to patients

MARCH 28, TWENTY-FIFTEEN

A high level of health protection; the right to benefit from medical treatment; aceess to preventative healthcare; diagnostic and curative treatment regardless of financial means, gender or nationality...

 

These principles are enshrined in the European Union Treaty and its Charter of Fundamental Rights, and EU institutions are bound to these principles in their actions.

 

But how much do you know about your rights as a patient when visiting another EU member state?

 

What if you are travelling and need to get a prescription?

 

We have added a patient information document to our website, so you can better understand your patient rights as an EU citizen.

 

Please click on the button below to download the document.

DOWNLOAD

EARLS General Assembly, Brussels

FEBRUARY 03, TWENTY-FIFTEEN

he EARL's General Assembly was held in Brussels on 23 February. Exciting plans for the coming year were discussed, details of which you will find on this page in the future.

 

EARLS is delighted to welcome l'Association France Ekbom (AFE) as an EARLS member. We are most confident that AFE's contribution to our work will be extremely valuable and we look forward to working together.

The website of AFE can be found at www.france-ekbom.fr

 

In the picture above:

Back L-R: Sten Sevborn (Sweden), Daragh Bogan (United Kingdom), Catherine Geyer (France), Mirose Gard (France), Esperanza López (Spain), Peter Reijngoud (Holland).

Front L-R: Britt Berntsen (Norway), Joke Jaarsma (Holland)

Not in picture Manuela Garcia (Spain)

European Medicines Agency publishes a video explaining the concept of medicines under additional monitoring

OCTOBER 01, TWENTY-THIRTEEN

A black triangle will start appearing on product information this autumn to encourage reporting of suspected adverse reactions.

 

The European Medicines Agency has published a video and a factsheet in all official European Union (EU) languages today explaining the meaning of the black triangle, which is now starting to appear in the product information of certain authorised medicines in the EU. The black triangle has recently been introduced in the EU as part of the concept of medicines under additional monitoring and is an important deliverable of the new European pharmacovigilance legislation.

 

Click the link below to be brought to the European Medicines Agency website where you can find more information.

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EARLS study presented at World Association of Sleep Medicine Conference, Valencia, Spain, 28 September-3 October

OCTOBER TWENTY-THIRTEEN

During the recent meeting of the World Association of Sleep Medicine (WASM), EARLS proudly presented the results of the study of 11,731 RLS patients from nine European countries as well as the USA and Canada. The WASM organizing committee had accepted three  EARLS presentations: 1. Diagnosis of RLS, 2. Sick leave and disability due to RLS, and 3. dosages used of RLS medicines. The posters attracted a lot of attention. Many lively discussions took place and new ideas were brought forward. The delegates were much impressed by the vast number of questionnaires analyzed and the accuracy with which these had been submitted by the RLS patients. The EARLS study was considered special because the population studied were all members of patient organizations.

 

Thus, EARLS have once again asked for urgent attention for the problems RLS patients are facing in getting a proper diagnosis, in having to stay home from work,  and of topics such as augmentation when too high doses of the dopamine agonists are given - which the study has shown occurs all too often.

EARLS at World Congress of Neurology, Vienna, 20-25 September

 SEPTEMBER TWENTY-THIRTEEN

For the first time, a Patient Corner was organized in conjunction with other neurology groups in the Exhibition Centre at the World Congress of Neurology. EARLS had secured a prominent place and was able to distribute information and network with the delegates from across the world. Other participants included European Headache Alliance, European Huntington’s Association, European Polio Union, International Brain Tumour Alliance, Danish Trigeminal Neuralgia Association, ADHD Europe, Pain Alliance Europe, Euro-Ataxia, European Multiple Sclerosis Platform.

 

EARLS used this opportunity to promote our work and increase awareness for Restless Legs among the 7,500 delegates. Many new contacts were made. On September 23rd, International RLS Awareness Day,  we organized a RLS Quiz (bottom left). Nine questions on RLS were asked, ranging from the obvious to the more detailed or the latest information. Prize to be won was a bottle of real good Austrian wine. Many delegates gave this a try, but there was only one person, a young neurologist from South Africa (large image left), who knew all the answers. Second and third prizes went to neurologists from India (bottom right). Doing this proved to be an excellent way of attracting people to the booth and talking with them about the RLS situation in their respective countries. New contacts were made in many countries where EARLS are not yet present.

The long-term treatment of restless legs syndrome/Willis–Ekbom disease: evidence-based guidelines and clinical consensus best practice guidance: a report from the International Restless Legs Syndrome Study Group

 AUGUST 01 TWENTY-THIRTEEN

The Executive Committee of the International Restless Legs Syndrome Study Group (IRLSSG) decided two years ago to create two a task force to perform an evidence-based review of the long-term efficacy and toxicity of RLS treatments. The main reason was that long-term treatment of this disorder has specific problems that may affect efficacy and are normally not addressed in shorter studies.

 

In addition, the task force considered it important to come to a consensus and establish recommendations based on experienced on those issues where no specific data were available.  The results of this were presented and approved at the annual IRLSSG Meeting in Boston 2012 and were shown on our web page as Summary Recommendations for the long-Term Treatment of RLS/Willis-Ekbom disease.

 

In the meantime, the full manuscript has been peer reviewed and published in Sleep Medicine where it can be freely downloaded at the www.irlssg.org website. The report contains important recommendations such as which treatment to start first and when, how to manage loss of efficacy and augmentation, and how to handle the main side effects of long-term treatment.

A study of RLS, completed in 2004, showed that only 8% of the many thousands of patients who took part received an RLS diagnosis

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