RLS ORGANISATIONS AND PARTNER ORGANISATIONS
European Alliance for Restless Legs Syndrome (EARLS)
RLS-UK was a founding member of EARLS, a non-profit, independent alliance of national patient organisations from various European countries and engages in activities that contribute to raising awareness of Restless Legs Syndrome. EARLS is supported by a Scientific Advisory Board consisting of a number of internationally renowned RLS Experts. Launched in 2009, EARLS raises important issues at a European level, issues which are common to all members and its role as a European patient advocacy group is to promote:
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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)
European Federation of Neurological Associations (EFNA)
The European Federation of Neurological Associations (EFNA) brings together European umbrella organisations of neurological patient advocacy groups, to work with other associations in the field of neurology, including the European Federation of Neurological Societies (EFNS), in what has been termed a “Partnership for Progress“.
EFNA’s aims are:
To improve the quality of life of people with neurological disorders, their families and carers
To promote rapid and accurate diagnosis, appropriate treatment, rehabilitation and care for people with neurological illnesses
To promote better access to information which is accurate and easy to understand
To promote public awareness and understanding of neurological conditions
To eliminate prejudice and stigma associated with neurological disorders
To increase priority given to neurology by policy and decision makers and by health care providers.
The Federation fulfils its aims by working through:
The European Commission and the European Parliament
Collaboration with relevant health professionals
Collaboration with other relevant organisations
Organisation of conferences and educational workshops
Preparation of guidelines on the optimum management of neurological conditions
Collaboration in the organisation and promulgation of international collaborative research projects
Collaboration in the establishment of registers and other databases of centres of treatment, teaching and research in the neurological conditions
The publication of newsletters, a directory of members and other publications including the development of electronic media
Campaigning at the European level
Assist in the development of patient support organisations
All other activities the EFNA General Assembly (GA) may deem appropriate.
International Restless Legs Syndrome Study Group (IRLSSG)
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The International Restless Legs Syndrome Study Group (IRLSSG) is an organization of professionals committed to advancing basic and clinical research on restless legs syndrome (RLS) also known as Willis-Ekbom disease (WED). Their mission includes the cooperative planning, implementation, analysis, and reporting of multi-center studies with an international emphasis. To this end, the IRLSSG aims to advance knowledge about the cause(s), pathogenesis, and clinical impact of RLS and related disorders. In pursuit of its goal, the IRLSSG will actively encourage recruitment of new investigators to its fields of interest and will cooperate with outside organizations that share its goals.
The IRLSSG is committed to the principles of open and full scientific communication and collaboration, peer review, full disclosure of potential conflicts of interest, and democratic governance of its organization and activities. The IRLSSG is also interested in providing scientific and medical information to professionals and the public regarding RLS/WED and related disorders.
International Restless Legs Syndrome Study Group (IRLSSG)
The European Restless Legs Syndrome Study Group (EURLSSG) Is non-profit association that brings together experts in the field of restless legs syndrome (RLS) who are actively involved in RLS research and dedicated to optimising patient outcomes by continuously improving standards for diagnosis and treatment of RLS.
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The organisation's objectives are:
Bringing together European experts within the field of RLS.
Development and execution of projects in basic and clinical research.
Organisation of scientific meetings, seminars, and advanced training activities.
Cooperation with national and international scientists, research organisations, or consortia that could support the objectives of the association.
Assignments of research contracts to universities or non-profit organisations.
Provision of grants to members for participation in scientific and educational meetings.
The Neurological Alliance
The Neurological Alliance is England's leading coalition of organisations and professional bodies supporting people with neurological conditions - over 90 organisations working together to ensure that every person affected by a neurological condition can access the right treatment, care and support at the right time.
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We work with the Scottish Neurological Alliance, The Wales Neurological Alliance and the North Ireland Neurological Charities Alliance to collect, analyse and share the evidence needed to create real change throughout the UK and improve services for everyone living with a neurological condition
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Our Vision:
Every person affected by a neurological condition can access the right treatment care and support at the right time.