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FINLAND
Suomen neurofibromatoosiyhdistys ry
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Main Office Adress:
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Suomen neurofibromatoosiyhdistys ry
PL 1096,
FI-00101 HELSINKI
FINLAND |
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General Email:
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toimisto@nf-yhdistys.org |
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Website Adress:
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http://www.nf-yhdistys.org |
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Phone:
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+358 6 417 5179 |
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Fax: |
+358 6 417 5179 |
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President:
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Esko Olavi Kandelin |
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Board Members:
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Anne Leppälä, vice-president
Kaisu Kandelin, secretary
Martti Komu, treasurer
Tuula Huhtiniemi
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Vice Members:
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Hannu Havakka
Pertti Kallio
Minna Lehtonen
Mirella Rautanen
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Amount of Members:
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About 450
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Aims:
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- give fact of NF to people, who have NF, their relatives, and familiars and people, who works with NF
- information meetings to general public
- to give aid to NF families and give chance meet people in same condition on camps and course
- aim at developing nursing and tracking system
- aim at developing medical research of NF
- international co-operation with national NF associations in Europe
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Recent Realisations:
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- Statutory meetings twice in year (on spring and on autumn)
- Newspaper articles in local newspapers, in province newspapers and in magazines.
- TV-program on Monday 27 October2003: Psychiatrist Ben Furman’s TV-program “Rare sicknesses”. This TV-program go along among other things chairman Esko Kandelin from Finnish NF and M.D., Ph.D. Minna Pöyhönen from Family Federation of Finland.
- In summer 2003, in Turku was The 10th European Neurofibromatosis Meeting from 24 July to 27 July 2003. then was TV-program and radio transmission, where were also M.D. Sirkku Peltonen and Mr. Esko Kandelin.
- Once year we have family camp. Last year it was in South Finland, on this year it will be in North Finland. So all members has change be with it. On the week end are NF-doctors telling about NF.
- We have planed local clubs to ours association. Now we have founded three clubs. Many who have NF, will never herd about us and NF. And many members of NF-Finland will be only member, but will do nothing for us. In the clubs are only 2-3 active members.
- On this year we have planed new brochure one for adults and one for youth on simplified language. Also we will send own brochure for doctors to all hospitals and health care centre in Finland. To this project we have got 10.000 • financial support from Finland‚s Slot Machine Association (RAY)
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