About the Norwegian Cystic Fibrosis Association
The Norwegian Cystic Fibrosis Association (NFCF) was founded on December 10, 1976, with an interim board. It serves as an advocacy organization for individuals with cystic fibrosis (CF) and their close relatives. As of 2018, there are about 370 people with CF in Norway, and the association has approximately 1,000 members.
NFCF's daily operations are managed by an executive director who reports to an elected board, supported by an organizational consultant and an information specialist. The association is divided into four regional groups, one in each part of the country, to ensure local presence and support. We also have a professional council responsible for providing expert advice and guidance.
Over the past decades, the treatment and management of CF have significantly advanced. What was once a life-threatening childhood disease is now a condition where many can lead fulfilling adult lives. Nonetheless, NFCF continuously works to improve the quality of life for those living with CF through information, support, and advocacy.
Our goals
Disseminate factual information:Provide accurate and up-to-date information about cystic fibrosis, including diagnosis and treatment methods. We work to increase understanding of the challenges faced by people with CF and their families.
Inform about treatment options and rights:Educate individuals with CF and their families about available treatments, support measures, and their rights. We aim to ensure equal opportunities for everyone through proper information.
Offer meeting places:Create various opportunities for people with CF and their families to exchange experiences, receive support, and build a sense of community.
Support research:Actively contribute to CF research to promote new knowledge and improve treatments.
Increase knowledge in the support system:Ensure that cystic fibrosis is recognized and understood throughout the public support system. This guarantees appropriate treatment, care, and support for people with CF and their families.
Engage in advocacy:Advocate for access to necessary medical care and support for individuals with CF. We strive to influence health policy to strengthen treatment options and rights.
Collaborate nationally and internationally:Maintain and strengthen connections with other national and international associations and organizations in the field to exchange knowledge and promote common goals.
NFCF membership in interest organizations
NFCF is actively involved in several important networks and organizations to strengthen our work and further our goals:
- FFO (The Norwegian federation of organizations of disabled people): We are a member of FFO through the small group secretariat, collaborating with other organizations to improve the quality of life for people with disabilities.
- Unge funksjonshemmede (young disabled): As a member, we help promote the rights and opportunities for young people with disabilities, ensuring their voices are heard.
- Organdonasjon - Organ donation foundation: NFCF is one of six patient organizations behind this foundation. We work together to promote awareness and understanding of organ donation.
- Fundraising NorwayThrough our membership, we participate in a broad network that works to improve and professionalize fundraising efforts, helping us secure necessary support and resources.
NFCF structure and operations
NFCF operates through a structure consisting of an employed executive director, an organizational consultant, an elected board, four regional boards, a professional council, and a youth council.
The executive director can be contacted at post@nfcf.no.
Professional council: The council is multidisciplinary, consisting of doctors, physiotherapists, and other healthcare professionals involved in various aspects of CF care in Norway. It handles all matters with professional aspects and works closely with the board. It also includes a network of interested professionals and a forum for physiotherapists specializing in CF.
Youth council: NFCF has a dedicated youth council representing the interests of young people with CF aged 13 to 25. The youth council consists of four representatives, one from each region. One of the representatives also sits on the board, ensuring the youth’s voice and perspective are considered in decision-making processes.
NFCF membership and activities
Being a member of NFCF provides a valuable opportunity to actively participate in our community. You will be invited to annual meetings with voting rights, where your input helps shape how NFCF works to improve the quality of life for individuals with CF and their families. You also gain access to reliable information about CF, treatment options, and rights. NFCF regularly organizes meetings and activities where you can meet others in similar situations. This network offers social support, experience sharing, and access to peers who understand your challenges.
Your membership also supports research and development in the CF field, which is crucial for advancing knowledge and improving treatment methods. Together, we strengthen NFCF's voice with decision-makers and health policymakers, ensuring the needs of the CF community are heard and understood. You will also receive regular newsletters to keep you updated on NFCF's work and current issues. This keeps you informed and engaged with the CF community's development.
Stay updated with our news under “News” and on our social media platforms, Facebook and Instagram for the latest information about our activities and initiatives. You can Become a member of NFCF here.
Need someone to talk to?
NFCF has a nationwide network of peers who are either relatives of people with CF or have CF themselves. These peers are available to offer support and share their experiences. You can contact one of our peers for a conversation. To learn more about peers and see the list, click here. We also have closed Facebook groups where you can chat with others in similar situations and exchange advice and support in a safe and understanding environment. For access to these groups, contact us at redaksjonen@nfcf.no
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).
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