Welcome to our website – here you will find information about The Norwegian Cystic Fibrosis Association (NFCF), our activities, the Norwegian CF-population and the The National Center for Cystic Fibrosis (Norsk senter for cystisk fibrose, NSCF).
Updated January 2017
The Norwegian Association for Cystic Fibrosis (NFCF – Norsk forening for cystisk fibrose) was founded in 1969. Our main focus-areas are:
Contact details NFCF
Our chairperson is Trine Mørk Fossen, firstname.lastname@example.org , postal address:
NORSK FORENING FOR CYSTISK FIBROSE (NFCF)
NFCF has a national board and 4 regional sub-organisations; North (region Nord), Mid (region Midt), West (region Vest) and South-East (region Sør-Øst) with their own boards. You can find the regional websites thus: Organisation->Regionene.
The regional boards are responsible for organizing activities for the members in their region. The regional boards answer to the national board. Information and contact details for the national board can be found under “Organisasjonen”, “Styret” on our website. Our activities can be found in the "Kalender" table in the right-hand column.
NFCF Activities and Membership
We organize social activities and seminars, both regionally and nationally. As a member of NFCF, you gain access to these popular activities, and you will also receive our magazine CF-bladet (in Norwegian) which is published 3 times per year.
The NFCF is actively involved in political and lobbyist activities to ensure the best possible healthcare services for the Norwegian CF-population and their families.
We also have a support-service called “Likeperson”, where you will find people well experienced living with CF. These people are persons who either themselves have CF, spouses, parents, grandparents or otherwise significant person to someone with CF. You can find the list of Likepersoner via the top menu thus: Aktiv og engasjert->Likepersoner.
Our medical advisory board(Fagrådet), consists of doctors (children and adults), nurses, social workers, all of which are specialized CF-professionals with extensive experience working with CF.
The Norwegian CF-population
There are approximately 300 patients with CF in Norway. About 60 percent is above the age of 18, approximately 10 percent is above the age of 40. As reports and numbers from the official CF-registry in Norway have not yet been pulished, we have no exact number of the total CF-population, nor do we have statistics on median age. The numbers presented here are based on the known patients registered at the Norwegian Cystic Fibrosis Resource Centre (Norsk senter for cystisk fibrose, NSCF). The Norwegian CF-registry will be set up during 2016, and the first reports are expected sometime in 2017. The registry will be managed by the Norwegian Cystic Fibrosis Resource Centre (Norsk senter for cystisk fibrose, NSCF), se contact info below.
The National Center for Cystic Fibrosis (Norsk senter for cystisk fibrose, NSCF).
The centre-activities are cross-disciplinary, and the centre staff consists of paediatricians, lungspecialists, physiotherapists, specialized nurses, nutrition specialists, social worker, psychologist, and administrative personnel. The centre has two subdivisions - children and adults. The Centre Director is Olav Trond Storrøsten, he is also Consultant Paediatrician.
The centre is situated at Oslo University Hospital, Ullevål, Oslo.
Norsk senter for cystisk fibrose
Phone: +4723 01 55 90 (9-15)
Fax:+ 47 23 01 55 91
- CF-division, children/adolescents:
Phone: 23 01 55 90 (9-15)
- CF-division, adults:
Phone: 23 01 59 64