In English

The Finnish Network for Rare Diseases consists of independent, non-governmental organisations and foundations that work for the interests of rare disease patients. The basic funding for the member organisations comes from Finland’s Slot Machine Association (Raha-automaattiyhdistys) and The Social Insurance Institution of Finland (Kansaneläkelaitos). The main goal of the network is to improve the conditions of people with a rare disease or disability by

-       co-operating with specialists, service providers, patient organisations and individual patients and their families

-       raising public awareness

-       influencing and informing decision makers, professionals and experts

-       sharing information and knowledge

The network is a credible actor as a representative and advocate of rare disease patients through the members’ expertise and experience in the field. The network is not dependent on volunteer resources alone nor is it a patient organisation or an alliance as such, but it bases its work on rare disease professionals. As a representative of rare disease patients the network functions as a bridge or a mailbox between the rare disease patients, the professionals and experts of the Finnish health and welfare system and the decision makers. The network gathers, interprets and connects the interests, themes and needs of the patients, rare disease issues, public services and other interest groups.

The members of the network function both independently inside their organisations as well as in co-operation within the network. The network can be regarded as a genuine part of the Finnish welfare system with the aim of reaching all the rare disease patients in Finland. The network has meetings on regular basis, with its members maintaining the web-site, attending seminars and conferences, and arranging meetings for both professionals and representatives of different patient organisations.

The network’s web-site (www.harvinaiset.fi) provides information on rare diseases, current issues, contacts and peer support. The main goal of the web-site is to offer a platform for rare disease patients and their families. Through the web-site the people/organisations working with rare disease issues in Finland can meet and find a common ground as well as information in their own language.

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The members of the Finnish Network for Rare Diseases

-       Finnish Association for Persons with Intellectual Disabilities

-       Finnish Association of People with Physical Disabilities

-       Finnish Central Organisation for Skin Patients

-       Finnish Deafblind Association

-       Finnish Epilepsy Association

-       Finnish Federation of Hard of Hearing

-       Finnish Federation of the Visually Impaired

-       Finnish Heart Association

-       Finnish Kidney and Liver Association

-       Finnish MS Society

-       Finnish Neuromuscular Disorders Association

-       Finnish Parkinson Association

-       Finnish Patient Association

-       Finnish Rheumatism Association

-       ORTON Foundation

-       Pulmonary Association Heli

-       Rehabilitation Home for Children (Rinnekoti-Säätiö)

-       The Medical Genetics Clinic at the Family Federation

Contact:

harvinaiset@harvinaiset.fi