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40 YEARS OF VOLUNTEERING AND ACTION The Finnish Epilepsy Association promotes equality for people with epilepsy and supports them and their family members to achieve the aim.

activities. The FEA, established in 1969, became a full member of IBE in 1972. The FEA is the national umbrella organisation for the 28 local affiliates in Finland. The number of members is 8,500.

Furthermore the FEA has 2000 donors who support economically the activities of the FEA. The FEA has not reached all the potential members yet. There are about 57,000 persons with epilepsy in Finland.

The aim is to educate the public about the different kinds of epilepsy syndromes and the individual symptoms of the disease 2. 3. 4.

There is an annual meeting (general assembly) of the representatives of the local affiliates. In the meeting a board is elected. The board has 6-10 meetings in a year.

2 40 YEARS OF VOLUNTEERING AND ACTION The Finnish Epilepsy Association promotes equality for people with epilepsy and supports them and their family members to achieve the aim. The FEA is a respected strong social and health care organisation which values respect of every human being, equality of people with epilepsy, users experiences and continuous development of its own activities. The FEA, established in 1969, became a full member of IBE in The FEA is the national umbrella organisation for the 28 local affiliates in Finland. The number of members is 8,500. They are mostly people with epilepsy and their family members. There are about 300 volunteers in the association and the affiliates. Furthermore the FEA has 2000 donors who support economically the activities of the FEA. The FEA has not reached all the potential members yet. There are about 57,000 persons with epilepsy in Finland. About 36,000 of these use their right to have their epilepsy medication covered by the state. 1. Achieve a world without prejudices of epilepsy. The aim is to educate the public about the different kinds of epilepsy syndromes and the individual symptoms of the disease Promote good quality of epilepsy care and rehabilitation Foster inclusion Guarantee adequate level of assistance, services, benefits and support The FEA is governed by trustees. There is an annual meeting (general assembly) of the representatives of the local affiliates. In the meeting a board is elected. The board has 6-10 meetings in a year. There are 17 full time employees. In addition, about 100 professionals receive fees for their work in the rehabilitation services of the FEA. The annual budget of the FEA is total 2 million euro. Income sources are governmental grants, service provision, membership fees and fundraising. Lobbying on behalf of the people with epilepsy, in order to achieve improved legislation and to ensure implementation. This is done at national and local level with the municipalities; by statements, expertise in different kinds of commissions and teams, dissemination of correct epilepsy information An essential part of the work of the FEA has always been co-operation with the public social and health care sector and close connections to the Finnish Epilepsy Society, the Finnish ILAE Chapter. This co-operation is evident in daily activity at local, national and international level. Publication of a newsletter and guidance material both on a website and in hard copy; in total over 200,000 pieces each year. Almost 50,000 persons visit the website of the FEA every year. People can call the help line of the FEA to get advice. Very important is to support the volunteers of the affiliates; training, information material and especially recognition f their activities. Provision of rehabilitation; carried out together with the National Social Insurance Institution. There is a special model of rehabilitation course (adaptation training) developed by the FEA. The rehabilitation courses are professionally organised. In training the experiences of other people with epilepsy are used as an important peer support element. About 500 people with epilepsy and family members participate in the courses each year. At the moment the FEA runs three development projects. Website project which aims to improve our services and get more interactive internet pages. A project that focuses on developing psycho-social support in groups led by professional facilitators and in co-operation with the public health sector. Many faces of epilepsy project which is our contribution to the global WHO/ILAE/ IBE Out of the Shadows campaign. This project increases epilepsy awareness and brings so called epilepsy ambassadors into publicity. FINNISH EPILEPSY ASSOCIATION Malmin kauppatie 26, FIN Helsinki phone fax epilepsialiitto@epilepsia.fi website THE CONTACT PERSON TO INTERNATIONAL LIAISON Sari Tervonen, Executive Director sari.tervonen@epilepsia.fi

Germany Full Member 1988 Individual Membership National German Epilepsy Association (DE) is a national non-profit organisation whose aim is to enhance the quality of life for persons affected by

Our mission is to counteract stigma and discrimination of people with epilepsy and their families as well as to strengthen people with epilepsy by encouraging them to deal with their epilepsy as

4 Germany Full Member 1988 Individual Membership National German Epilepsy Association (DE) is a national non-profit organisation whose aim is to enhance the quality of life for persons affected by epilepsy through means of information, education and awareness initiatives that build understanding and acceptance of epilepsy. Our mission is to counteract stigma and discrimination of people with epilepsy and their families as well as to strengthen people with epilepsy by encouraging them to deal with their epilepsy as self-confidently and as self-consciously as possible. To increase public awareness of epilepsy as the most frequent brain disorder in the world. To promote public and professional education about epilepsy. To identify the needs and special needs of people with epilepsy and their family members. To encourage government health departments to address the needs of treatment, including awareness, education, diagnosis, treatment care, services and prevention. To encourage governments of communities to support people with epilepsy of every age and their families on all social aspects. To give free information and advice in person and through the associations phone Hotline; To give expert advice To connect people in the whole country in epilepsy matters To offer seminars and work-shops on self-control To offer work-shops for parents of children with epilepsy, for leaders of self-help groups, as well as on various and important issues for those affected and differently concerned persons. To produce the magazine einfälle, the 26th year old journal of the epilepsy self help network in Germany, and the organisation related magazine. Our silver needle is a symbol that signifies the sense of community and solidarity and will encourage communication on epilepsy. National Event: Annual Day of Epilepsy since 1996.

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