Political advocacy for CF and PCD
The Norwegian Cystic Fibrosis Association (NFCF) continuously works to share information about cystic fibrosis (CF) and primary ciliary dyskinesia (PCD) and to ensure the quality of CF and PCD care in Norway is maintained and improved. Through these efforts, we safeguard our members' interests.
We achieve this through a variety of approaches. Our work spans short-term and long-term goals, addressing both broad strategic initiatives and specific hospital experiences of our members. We also provide feedback on reports and projects that are significant for CF and PCD.
Long-term and overarching goals
CF Norway collaborates with bureaucracies and decision-makers to ensure the organization of health services is as effective as possible.
- Structure and organization (responsibilities)
- Economy – resource availability
- Access to new medications
Key partners and collaborators
- Norwegian Center for Cystic Fibrosis (NSCF)
- Norwegian Competence Service for Rare Diagnoses (NKSD)
- The Directorate of Healthandthe Ministry of Health and Care Services (HOD)
- Health regions
- Individual hospitals and departments
We participate in seminars and meetings to advocate for the needs of people with CF.
Additionally, we are members ofthe Norwegian Federation of Organizations of Disabled People (FFO)andYoung Disabled.
Daily life of members
We focus on close collaboration with nurses and doctors in departments treating CF patients. This involves sharing relevant information about CF and PCD and our events and engaging in both informal discussions and formal collaborations.
We stay informed about patients' experiences in various CF departments and reach out by phone, mail, or email if improvements are needed. We encourage members to inform us if they encounter issues or discrepancies in their hospital experiences.
We offer assistance and advice for filing complaints in cases of serious concerns.
Quality factors we prioritize
Multidisciplinary approach – Individuals with CF should have seamless access to CF-specialized doctors, nurses, physiotherapists, nutritionists, social workers, and microbiologists, among others. They should also see CF-specialized healthcare professionals at least once a year or as needed, based on their preferences. Additionally, they should have access to infection-free and hygienic health facilities. These are the main elements we strive to secure for our members.
Objective – longer and better lives
Our objective is to ensure that Norwegian CF and PCD care meets high-quality standards and adheres to international guidelines for excellent care. An essential part of our goal is to provide equally high-quality CF and PCD care across the country. High-quality care leads to longer, healthier lives.
Other areas of focus
We are also committed to safeguarding rights and compliance in kindergartens, schools, and higher education, as these institutions are critical pathways into the workforce, according to Young Disabled.
Support us
We are grateful for all
contributions to our work.
Support us
We are grateful for all
contributions to our work.
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