CF og PCD

Cystic Fibrosis (CF) is a congenital, severe genetic disorder that causes thick mucus to build up in the lungs, making them prone to infections.

Primary Ciliary Dyskinesia (PCD) is a rare congenital condition caused by defects in the structure and function of the cilia, leading to mucus accumulation in the upper and lower airways.

The Norwegian Association for Cystic Fibrosis (NFCF) is an organization for individuals diagnosed with cystic fibrosis and primary ciliary dyskinesia, as well as their families and caregivers. 

NEWS AND ARTICLES

Number of people with CF in Norway

%

Adults

%

Children

TREATMENT WITH KAFTRIO

Cystic fibrosis requires comprehensive multidisciplinary treatment provided by CF-competent healthcare professionals. The treatment is time-consuming for both the patient and the patient's family. Kaftrio is medicine that makes life easier.

$

PCD – Primary Ciliary Dyskinesia

Through CF Norway, PCD patients will have the opportunity to contact others in the same situation and good professional information through a common channel. Read more about PCD and CFNorge's offer for those with PCD.

$

PCD – Primary Ciliary Dyskinesia

Through CF Norway, PCD patients will have the opportunity to contact others in the same situation and good professional information through a common channel. Read more about PCD and CFNorge's offer for those with PCD.

$
NFCF's Organizational Structure and Operations

NFCF operates through an employed managing director, who can be reached atpost@nfcf.no, an elected board, four regional boards, an elected board, four regional boards, and a professional council. We also have a dedicated youth council representing the interests of young people aged 13 to 25 with CF.

NFCF’s Fagråd er tverrfaglig, og satt sammen av leger, fysioterapeuter og annet helsepersonell. Disse fagfolkene er knyttet til ulike deler av CF-omsorgen i Norge. Fagrådet skal ivareta alle saker som har faglige aspekter, og har et nært samarbeid med foreningens styre. Til fagrådet er det knyttet et kontaktnett av interesserte fagpersoner ved institusjoner og avdelinger som behandler CF. Et faglig forum for fysioterapeuter som jobber med CF er også knyttet til foreningen. NFCFs ungdomsråd består av to ungdomsrepresentanter fra hver region, til sammen åtte representanter. En av representantene møter også i styret. 

NFCF's membership in interest organizations

NFCF is a member ofFunksjonshemmedes fellesforbund (FFO)within the small group's secretariat. We are also a member ofUnge funksjonshemmede. Additionally, NFCF is one of six patient organizations supportingStiftelsen organdonasjon, which works to promote and disseminate knowledge about organ donation. 

Need someone to talk to?

NFCF offers a nationwide network of contact persons known as ''Likepersoner'', (peer supporters) available to assist those who need someone to talk to. Likepersoner includes parents of children with CF and adults living with CF themselves. You are welcome to reach out to any of our likepersoner directly. Additionally, we have closed Facebook groups where you can connect and converse with others who share similar experiences.

Support for healthcare professionals

NFCF supports healthcare professionals working with CF in Norway, allowing them to hold meetings and gatherings. Such funds are announced here oncfnorge.no Read more about professional council funds here.

Public health service

The Norwegian Center for Cystic Fibrosis (NSCF)was established at Oslo University Hospital in the fall of 1998. NSCF is part ofthe National Competence Service for Rare Diagnoses (NKSD). 

Support us

We are grateful for all
contributions to our work.

Support us

We are grateful for all
contributions to our work.

en_GBEnglish