Organizational structure and administration
The organizational structure of the Norwegian Cystic Fibrosis Association (NFCF) is multi-tiered and includes several key roles that are crucial for the organization's operations and influence.
At the core of the organization is the Executive Director, who is responsible for the day-to-day operations of NFCF and reports directly to the Board of Directors.The board, in turn, sets overarching strategies and makes decisions that influence the association’s direction and activities. In addition to the board and Executive Director, NFCF has an organizational consultant who provides administrative support and communications assistance. We also have a communications officer on a voluntary basis. Finally, there is a Youth Council representing the interests of young people aged 13 to 25.
The organization is further structured regionally, with separate regional boards for each part of the country. These regional boards are responsible for coordinating local activities and services and ensuring that members have access to relevant support and information in their area. In addition to these roles, NFCF has an Expert Advisory Board consisting of professionals from various disciplines related to cystic fibrosis. This advisory board provides professional expertise and guidance, ensuring that NFCF stays up to date.
Executive Director
NFCF’s daily operations are led by the Executive Director, Ellen Damhaug Scheel.
Contact information
Telefon: +47 41 27 41 51
Email:dagligleder@nfcf.no
Our Executive Director reports to the association’sstyre.
Expert Advisory Board
The members of the Expert Advisory Board are elected on a rotating basis at the annual general meeting, which takes place every year in April.
The composition of the Expert Advisory Board for the 2024–2025 term is:
- Leader: Ketil Mevold, Chief Physician, Department of Pediatrics, Nordland Hospital, Bodø
- Vice Chair: Ellen Hunstad, Clinical Nurse Specialist, NSCF, Oslo
- Nordland Hospital, Bodø
- Member: Bjørn Skrede, Chief Physician, Department of Pulmonary Medicine, Oslo University Hospital, Ullevål
- Member: Atle Rosendahl Riise, Chief Physician, Department of Pulmonology, Haukeland University Hospital, Bergen
- Member: Heidi Grundt, Chief Physician, Department of Pulmonology, Stavanger University Hospital
- Member: Merete Austnes, Clinical Nurse, Health Møre og Romsdal HF, Department of Pulmonology
- Member: Tonje Klætte, Pulmonary Physiotherapist
The Executive Director of NFCF has the right to attend meetings of the Expert Advisory Board.
Inquiries to the Expert Advisory Board can be directed to Chair of the Expert Advisory Board or toNFCF Central Office.
Board
The Executive Board is the association’s highest internal body between annual general meetings. The board consists of the Chair, Deputy Chair, three board members, and one deputy member elected at the annual general meeting. In addition, the regional leaders from our four regions are members of the Executive Board. The Chair is elected annually, while the other board members are elected for a two-year term.
Hovedstyret skal lede NFCFs virksomhet i samsvar med foreningens vedtekter, strategisk plan og årsmøtevedtak
Contact information
The Chair of the Board is Hilde Nyberg.
Email: nyberghilde@gmail.com, 73 52 40 72
Youth council
The Youth Council is by young people, for young people – organizing activities that promote community among children and youth in the association, while also providing a safe space where they can ask questions and share experiences about growing up with CF or PCD. These activities are exclusive to the youth, without participation or involvement from adult members.
The age range for youth events has traditionally been 12–25, but it has recently been expanded to include younger children, ensuring that everyone feels seen and included. Activities are adapted with some separate sessions for younger and older participants, as well as joint activities that bring all age groups together.
The Youth Council organizes and leads activities during courses and annual meetings, as well as hosting several annual in-person events exclusively for young people. These activities are designed to be engaging, fun, and to help build a sense of community among our young members. The council is also active on social media and organizes digital meeting spaces such as webinars and surveys aimed at the youth.
Currently, the Youth Council consists of two representatives from the Mid-Norway region and two representatives from the Southeast region. To av representantene i ungdomsrådet er også likepersoner, og du finner de på listen.
Contact person for the Youth Council:
gunnar.nyberg.hansen@gmail.com
Are you interested in joining the Snapchat group for young people, or would you like to be part of NFCF’s Youth Council? Please contact the contact person.
The regions
NFCF has four regions: Southeast, West, Central, and North. The regions are responsible for organizing local events for their members. These events form the backbone of the association and serve as important meeting places. When you join the association, you are automatically assigned to the correct region based on your residential address. The regional boards are happy to hear from you, so don’t hesitate to get in touch. Please select your region from the list on the left.
North
The Northern region is the association’s smallest in terms of membership, but it has a strong sense of community and often meets informally in addition to organized events.
The region covers Nordland, Troms, and Finnmark, and the specialized CF medical team is based at Nordland Hospital. Members also make use of the Norwegian Cystic Fibrosis Center located at Oslo University Hospital, Ullevål.
- January/February: Regional annual meeting. It always takes place during the day on a Saturday and usually lasts around four hours. Registration is required.
- August/September: Community weekend from Friday to Sunday, open to all age groups. Includes activities, professional programs, peer support, socializing, and experience sharing, with babysitting available. The location of the community weekend varies each year. Registration is required.
North Region Leader is Trine Røssvassbukt
Contact info – Email: trinerossvass@gmail.com Tlf: 47901 81 227
Central
The Central Norway region is an active region with many social members.
It covers Trøndelag and Møre og Romsdal. The specialized CF medical teams are based at St. Olav’s Hospital and Ålesund Hospital. Our members also make use of the Norwegian Cystic Fibrosis Center located at Oslo University Hospital, Ullevål. During the year, the Central Norway region holds the following events:
- January/February: Regional annual meeting. It always takes place during the day on a Saturday and usually lasts around four hours. Registration is required.
- August/September: Training and peer support weekend from Friday to Sunday, open to all age groups. Includes activities, professional programs, peer support, socializing, and experience sharing, with babysitting available. The location of the weekend varies each year. Registration is required.
Central Norway Region Leader is Marianne Meland Ødegård
Contact info – Email: marianne@modegard.no, Tlf: 975 18 142
West
The Western Norway region is also an active region and has several strong regional CF medical teams. Region West consists of the counties of Vestland and Rogaland. The main centers of CF medical expertise in the region are Haukeland University Hospital in Bergen and Stavanger University Hospital. Our members also make use of the Norwegian Cystic Fibrosis Center located at Oslo University Hospital, Ullevål.
During the year, we hold the following events:
- January/February: Regional annual meeting. It always takes place during the day on a Saturday and usually lasts around four hours. Registration is required.
- August/September: Community weekend from Friday to Sunday, open to all age groups. Includes activities, professional programs, peer support, socializing, and experience sharing, with babysitting available. The location of the community weekend varies each year. Registration is required.
Western Norway Region Leader is Eli-Karin Wiberg
Contact info – Email: ek.wiberg@gmail.com, Tlf: 900 32 954
Southeast
The Southeast region is open to everyone, whether you are a parent of young children, an adult with CF, or a relative. The region covers the counties of Oslo, Viken, Vestfold and Telemark, Innlandet, and Agder. Southeast is NFCF’s largest region. The region’s members have Oslo University Hospital, Ullevål as their CF medical center, but also make use of Sørlandet Hospital and Tønsberg Hospital. The Norwegian Cystic Fibrosis Center (National Competence Service for Cystic Fibrosis) is physically located at Oslo University Hospital, Ullevål.
During the year, the Southeast region holds the following events:
- January/February: Regional annual meeting. It always takes place during the day on a Saturday and usually lasts around four hours. Registration is required.
- June: Tusenfryd Day. A full-day event on the second Saturday in June at the amusement park in Kolbotn. Age group: all. Peer supporters participate. NFCF covers admission for members. Friends are welcome. Registration is required.
- August/September: Community weekend from Friday to Sunday, open to all age groups. Includes activities, professional programs, peer supporters, socializing, and experience sharing, with babysitting available. The location of the weekend varies each year. Registration is required.
Southeast Norway Region Leader is Vivi Finsveen
Contact info – Email: vivi.finsveen@gmail.com , Tlf: 75 13 29 99
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