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Whether you are considering Deep Brain Stimulation (DBS) or are already inthe Boston Scientific family, we’ve provided some links to helpful support groups that can provide additional information about symptoms management.
Parkinson's Europe, formerly the European Parkinson's Disease Association, is a non-political, non-religious, and non-profit making organisation concerned with the health and welfare of people living with Parkinson's disease and their families and carers.
Dystonia Europe was formed in 1993 as European Dystonia Federation — the European umbrella organisation for national dystonia groups. From 2012, Dystonia Europe has become the platform at the European level for all dystonia stakeholders, to benefit patients and their families by promoting more interest in dystonia.
In 1969, Parkinson’s UK was founded in a one-room office in Putney, London. One of their major goals is work together to improve life for everyone living with Parkinson’s in the UK and to bring forward better treatments and a cure.
The NTF was founded by Professor Leslie Findley (UK) and the late Professor William Koller (USA) in the two countries simultaneously in 1992. Subsequently, in 1994, the NTF became a separate registered charity in its own right.
Dystonia UK is the only UK national charity dedicated to helping people living with dystonia. Dystonia UK was established in 1983 as The Dystonia Society, by a small group of people living with dystonia and in 2019 the association was rebranded to become Dystonia UK to better reflect their growing community.
The Deutsche Parkinson Vereinigung Bundesverband e.V. is a self-help association founded in 1981 by people who were themselves affected by Parkinson's disease. Today, we have around 19,000 members and a good 450 regional groups and contact points. We see ourselves as an association of people who deal with Parkinson's disease as affected persons, partners, relatives, work colleagues and people from the health care professions.
Parkinson Youngster believes in the concept of merging digital and classic self-help. This german association argues that modern, innovative education and projects are purposeful for the visibility and social perception of the disease, as society is increasingly recognizing that Parkinson's can affect or hit anyone, at any age.
The German Dystonia Society (DDG) was founded in 1993 as a self-help organization. It is recognized as a non-profit association, as its activities are not aimed at economic profit.
The association was founded in 2017 and it is active nationwide. This self-help organization has set itself the task of catching people with the disease dystonia, supporting them and exchanging information with each other. Anyone can become a member, affected persons and their relatives, but also people not affected by the disease.
AMADYS was created in 1987. It is a patient association for patients with Dystonia disease, and their relatives, which brings together around 2000 members, patients, relatives and friends, volunteers throughout the national territory.
France Parkinson was created in 1984. It is a patient association for patients with Parkinson disease, and their relatives, which brings together around 10 000 members, patients, relatives and friends, volunteers throughout the national territory.
The Foundation, established in 2014 by LIMPE, has exclusively social solidarity purposes. Itsmain objective is to support medical and scientific research, education and dissemination of information on Parkinson's disease, Parkinsonisms, dystonias, chorea (includingHuntington's chorea), tremors, ataxias, othermovement disorders and dementias.
The FEP, founded in 1996, has been workingfor more than 20 years to improve the quality of lives for people with Parkinson's disease and their families. Itsmission is to represent the associative movement at national and international level to defend the interests of people affected by Parkinson's disease.
The Norwegian Dystonia Association is a volutary patient association for people who hae been diagnosed iwth Dystonia, and for their relevatives. The association is nationwide and was formally founded in 1993. Their goal, to be a supportive network for people diagnosed with dystonia.
The Norwegian Parkinson's Association is a nationwide interest organization for people with parkinsonism, their relatives and other interested parties. The organization has approximately 5500 members, 47 county and local associations and 350 elected representatives.
Dystonia Ireland was founded in 1998 with a membership of over 450 persons at present. Its aims are to raise the level of awareness amongst the general public and the medical profession, to serve the needs of all dystonia affected persons and their families by offering support, information and advice, and to promote research into the treatment of dystonia. A monthly meeting is held in Dublin, which will be extended to other regions throughout Ireland soon. A Newsletter and brochures are available and scientific meetings are organised for the members.
The Parkinson’s Association of Ireland is a charity, based in Dublin with branches throughout the country. Our aim is to assist people with Parkinson’s, their families and carers, health professionals and other interested people by offering support, a listening ear and information on any aspect of living with Parkinson’s. We currently receive no funding from the Irish state.
One of the main activities of the Polish Society of Dystonia Patients is to increase awareness of the condition among the public and medical profession and to help patients find the best treatment available. Sharing information and experiences with other patients is another step forward to achieve the publicity dystonia needs.
KrakowAssociation of People Afflicted with Parkinson's Disease
The Krakow Association of People Affected by Parkinson's Disease together with its Statute was registered on December 30, 1997 by a decision of the Provincial Court, Registration Department, in Krakow.
The Honorary President of KSODChP is Prof. Anna Krygowska-Wajs, MD, PhD. For her outstanding merits in acting for the benefit of sick members of the Association, at the request of the Board, the President of the Republic of Poland awarded her the Golden Cross of Merit, awarded on November 17, 2009 by the Voivode of Małopolska, Stanisław Kracik (see Gallery)
In 1987 The Swedish Parkinson’s Disease Association initiated the launching of a research funding organization called the Swedish Parkinson Foundation. The Foundation is under the patronage of her Majesty Queen Silvia and is dedicated to support clinical research in the Parkinson area.The Swedish Parkinson Foundation, (Parkinsonfonden).
The Swedish Dystonia Association was founded in 1991. Today the Association has more than 430 members and produces a newsletter 4 times per year. Various leaflets and brochures are also being published and various forms of support are given to create and maintain self-help groups and networks in different regions of the country.
Finnish Dystonia Association
The Finnish Dystonia Association was founded in 1998 with the aim to provide information about the neurological movement disorder dystonia, and to offer support to those affected by dystonia and their families.
The national association, totally run on a voluntary basis, has now been around for 15 years and relies on the knowledge, proficiency and resources of those volunteering.
The Finnish Dystonia Association has about 800 members and we publish a bulletin informing about our activities every three months. The Association has two phone lines for peer support and these are operated by people affected by dystonia. We have 20 clubs all over Finland.
The Finnish Association for Movement Disorders is a nationwide advocacy organisation for people with movement disorders and their loved ones.
Do you have Parkinson's or do you know someone with Parkinson's? You are not alone. The Parkinson's Association provides knowledge, support and networks to everyone living with or close to Parkinson's.
Turkish Association of Parkinson Disease aims to increase awareness of the disease, support the patients and their relatives, create the basis for self-reliance, provide the most necessary information and care and also to support scientific work in this field.
Association of clinical studies in the field of Functional Neurosurgery was created in November, 2013 in Istanbul by physicians who believe in Neuromodulation therapy as one of the options to help our society to manage movement disorders. This association aims to educate professionals, patients and society by scientific meetings, publications, websites and media.
Association of NS patients was founded in 2014 by group of Parkinson patients after DBS procedure. Medical treatment doesn’t improve quality of life of patients with movement disorders to the extent when they wouldn’t suffer from hard side effects or post traumatic disorder. We’re here to support the patients and their close ones to increase their awareness of movement disorders, educate them on existing methods of disease management and attract attention of the public and organizations to our problems.
