Welcome to The Norwegian Cystic Fibrosis Association (NFCF). Read on for information about how we can help, our activities and support-options, the Norwegian CF-population and medical services at The National Center for Cystic Fibrosis (Norsk senter for cystisk fibrose, NSCF).
Last updated January 2023
If you are a foreign national with CF vacationing or residing in Norway, and in need of CF-specialised medical assistance, please refer to the section The National Centre for Cystic Fibrosis at the bottom of the page. Otherwise, contact your "fastlege", your local hospital or the emergency services at 113.
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 office is run by our Chief Operating Officer (daglig leder) Mrs. Ellen Damhaug Scheel, reachable at email@example.com. Chairperson of our is board Mrs. Hilde Nyberg, also reachable at firstname.lastname@example.org. As of January 2023 our postal adress is the following:
NORSK FORENING FOR CYSTISK FIBROSE (NFCF)
Phone: +47 41 27 41 51
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. Become a member.
A person to talk to: Our dedicated support-service is called “Likeperson”. This support service consists of people well experienced living with CF. They either themselves have CF, or are 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.
Facebook-based services: Residents in Scandinavia can also access our facebookpage CFNorge. This is a great way to get the latest on Norwegian CF-related news, for instance the CFTR-modulators. We also reccomed our instagram @cf_norge.
For Norwegian residents we offer private and moderated Facebookgroups aimed at families and adults. Membership by application and vetting. These groups are very popular, and excellent for initiating private relationships with other people/families with CF. Please contact us by email if this is something for you.
Our office is run by our Chief Operating Officer, Mrs. Ellen Damhaug Scheel, reachable at email@example.com. The COO answers to our national board. Assisting the board, and also represented there, we have 4 regional sub-organisations; North (region Nord), Mid (region Midt), West (region Vest) and South-East (region Sør-Øst) with their own local boards. You can find the regional websites thus: Organisation->Regionene.
The regional boards are responsible for organizing activities for the members in their region, assisted by the COO. 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.
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 2023) 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).
There is also a scientific Norwegian CF-registry, 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 Mr. Egil Bakkeheim, Dr. Med. and Consultant Paeditrician.
The centre is situated at Oslo University Hospital, Ullevål, Oslo.
Norsk senter for cystisk fibrose
Phone: +47 23 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 latest report; 2021 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.