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Finnish Huntington Association

Welcome to the website of the Finnish Huntington Association! Huntington's disease (HD) is a rare, inherited neurological disorder. This website is mainly targeted at families in Finland affected by Huntington's disease and their healthcare staff.

The Finnish Huntington Association was founded in 1997 to increase communication between families and to improve the care of HD patients. The association currently has around 112 members.

Huntington's disease

Huntington's disease is a progressive disorder affecting the central nervous system. It affects movement control, memory, judgment and thinking abilities, emotional control and personality. There are no effective treatments for Huntington's disease. 

Huntington's disease is hereditary. It is caused by a faulty 'CAG' repeat in the gene that produces a protein called Huntingtin.The faulty CAG repeat is passed on from the parent to the child. Only those children can develop the disease who have a parent with the faulty gene. Anyone who inherits the faulty gene will, at some stage, develop the disease. The diagnosis is confirmed with a genetic test of a blood sample.

The symptoms of Huntington’s disease usually develop when people are between 30-50 years old, although they can start much earlier or much later and can differ from person to person, even in the same family. Sometimes, the symptoms are present for a long time before a diagnosis of Huntington’s disease is made. This is especially true when people are not aware that Huntington’s disease is in their family.

HD is a rare disease which affects up to approximately 4 - 10/100 000 people in most European countries. In Finland there are approximately 50 families that have been diagnosed with Huntington's disease. In the whole of Finland, it is estimated that the figure is at least 70 - 100 families and at least 200 patients with the disease. 

You can find out more about the disease here:
https://www.euro-hd.net/html/disease/faq?set-language-to=en

The association board

The Finnish Huntington Association is governed by a board which has seven members. The chairwoman of the board during the 2016-2017 term is Erika Yli-Halla. You can contact us by sending an email to info@huntington.fi.

Services provided to HD families in Finland

Peer support is of utmost importance to people affected by HD. As a member of the Finnish Huntington Association, you are invited to take part in a variety of peer support activities and events throughout the year.

We hold a number of ‘Regional cafés’ each year in different locations around Finland for people to get together for coffee and snacks, and more importantly, peer support. Please check the ‘Latest news’ section on the right for details. We also run a ‘Peer support network’ where members can contact other members to share their experiences by phone or email.

Moreover, together with the Finnish Parkinson Association, we organise an annual residential peer support group meet in Turku for HD patients and their families. You can find more information about all these ectivities in the Peer support section (in Finnish and Swedish).

The Finnish Parkinson Association organises an annual residential adaptation training and rehabilitation course for HD patients and their families at the Rehabilitation Centre Suvituuli in Turku, Finland. Courses are nearly cost-free for participants.

Families affected by Huntington's disease can also get telephone advice from a Parkinson Disease Association nurse or neurologist.

Lastly, members get discounts from a selection of Finnish companies, receive a magazine called Parkinson post with research updates, and an information resource about HD.

Joining is cheap! This year's (2015) membership fee is 20 euros. Download an application form

National and international activities

We are part of the Finnish Parkinson Association (a national organisation for public health and the disabled).  We also helped to set up HARSO (an umbrella organisation for patient associations of rare diseases in Finland).

We are members of the following international federations:

Additionally, as part of the Finnish Parkinson Association, we are involved in the Finnish Network for Rare Diseases (Harvinaiset-verkosto). It consists of 18 independent, non-governmental organisations and foundations that work for the interests of rare disease patients.

A warm welcome to join in the activities of the Finnish Huntington Association!

Latest news

Finnish Huntington Association is now in Facebook

Apply for an HD course in 2017
For people with HD and their families. See full schedule (in Finnish).

MTLH-funded holidays for patients

EHDN 2017 Meeting
Sofia, Bulgaria

Need for HD information and support services mapped in EHDN study 
Anyone under the age of 50 who is either at risk or has tested (positive or negative) and does not currently have symptoms can participate in the study. Read more and fill in the questionnaire (only in English)!

Research News

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