NORWAY

Norsk Forening for Nevrofibromatose

		Main Office Adress:	Norsk Forening for Nevrofibromatose Asgaarden 10, 3179 Asgardstrand NORWAY
		General Email:	atique@online.no
		Website Adress:	http://nevrofibromatose.com
		Phone:	+33 08 14 50
		President:	Britt Ohro
		Board Members:	Leif Bjarne Gjessing, secretary Tove Granum, treasurer Terje Ogreid Bjorrg Ranheim Anette Gjessing Tonje Sollie Kristin Haukeland
		Amount of Members:	482
		Aims:	To advise, inform and assist anyone who has nevrofibromatose and their families To spread information about NF to hospitals and other relevant institutions To inform goverment agencies about the special problems NF can cause To establish contact with similar organisations in other countries Every year about 15 children is born with NF in Norway. All in all in excess of 1000 persons has been diagnosed with NF1 and about 20 with NF2. If you are one of these, or you are related to one of them you can join our organisation. Here you and your relatives can recive information, help and advice from others in the same situation. Both the nationwide and the local organisations has activities you can take part in. As with other rear conditions, knowledge about NF is often poor among medical professionals, schools and health and social services. NFFNF can help with information and guidance.
		Recent Realisations:	Summer camp for youth group Winter camp for the Youth group, they are planning and taking care of things to do themselves - the board in the Youth group Summer camp in Sweden, our volunteers was there as leaders of the group Week-end for adults with NF-diagnosis travel club Region week-end gathering, and for NF-2 as well courses for members - how to manage daily living and co-operation with our comprehensive center Frambu