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 August 31st 2018
The Norwegian Association for Cystic Fibrosis (NFCF – Norsk forening for cystisk fibrose) was founded in 1976. Our main focus-areas are:
Contact details NFCF
Our chairperson is Inger Karin Natlandsmyr, email@example.com , 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.
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 persons to someone with CF. You can find the list of Likepersoner via the top menu thus: Aktiv og engasjert->Likepersoner.
Residents in Scandinavia can also access our facebookpage CFNorge. For residents in Norway we offer closed and moderated Facebookgroups aimed at families and adults. Membership by application and vetting.
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 370 patients (per 2018) with CF in Norway. About 60 percent is above the age of 18, approximately 10 percent is above the age of 40. The numbers presented here are based on the known patients registered at the Norwegian Cystic Fibrosis Resource Centre (Norsk senter for cystisk fibrose, NSCF). For more details, please refer to the section The Norwegian CF-registry below.
The centre is part of the national public health service. The centre-activities are cross-disciplinary, and the centre staff consists of paediatricians, pulmonologists, physiotherapists, specialized nurses, nutrition specialists, social workers 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
The Norwegian CF-registry
The registry was set up in 2016, and their first report; 2016 Annual Report (in Norwegian) can be found here. Even though not in English, the report is easy to understand due to its brevity and effficient use of tables and figures. The registry is managed by the Norwegian Cystic Fibrosis Resource Centre (Norsk senter for cystisk fibrose, NSCF), se contact info above.