Cystisk Fibrose Foreningen

What Cystisk Fibrose Foreningen does

Cystisk Fibrose Foreningen (CFF) is a Danish non-profit patient advocacy association and the only organization in Denmark dedicated to cystic fibrosis (CF). Headquartered in Taastrup, the association serves approximately 600 people living with CF in Denmark (200 children and 300 adults) plus their families, with additional reach to an estimated 180,000 healthy CF gene carriers. CFF is member-governed and operates with a small staff of 5 employees, funded through annual membership dues, private donations, foundation grants, corporate sponsorships, and testamentary bequests. The association works closely with Denmark's two specialized CF Centers at Rigshospitalet and Aarhus Universitetshospital and with the Statens Serum Institut newborn screening program.

CFF's service portfolio is organized around three strategic pillars: access to effective treatments, specialized healthcare services, and psychosocial support. Core offerings include free social worker and psychologist counseling for members, an annual family course held at Brogaarden in Middelfart, peer-to-peer network groups, and Gode Dage Legater (Good Days Grants) for severely affected patients. Educational output comprises a children's book ('Maveløjer og stædige slimklatter'), nine life-phase brochures, two podcast series ('Tæt På' and 'Ud af mørket'), and a video content series covering pediatric, youth, and adult life with CF. Membership fees are collected in February for the calendar year and have historically increased by approximately 5% annually.

CFF participates in healthcare policy through CF Europe, Danske Handicaporganisationer, and Sjældne Diagnoser, and was instrumental in a historic 2018 agreement securing access to CFTR modulator therapies for Danish patients. The organization is not publicly traded, has no parent company, and does not disclose financial figures. Revenue is denominated in DKK and is not publicly disclosed.

Name

Cystisk Fibrose Foreningen

Legal name

Cystisk Fibrose Foreningen

Website

https://cystiskfibrose.dk

Company type

Private

Operating status

Operating

Headcount range

1–10 employees

Short description

Cystisk Fibrose Foreningen is a Danish non-profit patient advocacy association supporting approximately 600 children, youth, and adults with cystic fibrosis and their families through counseling, family courses, grants, educational publications, and treatment access advocacy.

Ownership category

akta.pro rank

Product category

Patient Advocacy and Chronic Disease Support Services

NAICS

Voluntary Health Organizations (813212), Grantmaking and Giving Services (81321), Religious, Grantmaking, Civic, Professional, and Similar Organizations (813)

SIC

Services-Misc Health & Allied Services, Nec (8090)

akta.pro industry

PRIMARYHLAKANAK

Cystic Fibrosis & Bronchiectasis Care

Healthcare & Life Sciences/Specialist Medical Practice/Pulmonology & Sleep Medicine

Keywords

• Cystic fibrosis advocacy
• Patient support services
• Chronic disease nonprofit
• Rare disease association
• Psychosocial counseling

Headquarters

HQ city

Taastrup

HQ country

Denmark

HQ region

Europe

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Others, Infrastructure

Revenue model

1. Membership fees: Annual membership fees with prices publicly available on the website. Membership prices increase by approximately 5% annually. Annual dues are collected in February for the calendar year.
2. Donations: One-time and recurring donations from supporters. Options include fixed regular support, one-time donations, and legacy donations.
3. Grant funding: Support from foundations, companies, and private individuals to fund research, grants, and activities such as Gode Dage Legater.

Pricing tiers

Distribution channels4 records

Marketing channels8 records

Core offering

Cystisk Fibrose Foreningen is a Danish non-profit patient advocacy association that provides free social and psychological counseling, educational publications (children's books, brochures, videos, podcasts), annual family courses, peer-to-peer network groups, and grants (Gode Dage Legater) to people with cystic fibrosis and their families in Denmark. It also funds CF research and advocates for access to effective treatments and specialized healthcare services.

Product overview

Cystisk Fibrose Foreningen is a Danish patient advocacy organization (charitable association) offering information, support services, and community programs for people with cystic fibrosis and their families. The organization provides publications (children's books like 'Maveløjer og stædige slimklatter' and 'Mia og Bimle', plus 9 brochures covering life phases), content series (podcasts 'Tæt På' and 'Ud af mørket', video content), psychosocial support (social and psychological counseling), educational programs (annual Family Course), and grant programs (Gode Dage Legater). The portfolio is organized around three strategic focus areas: access to effective treatments, healthcare services with expertise, and psychosocial support for cystic fibrosis.

Differentiator

Problem solved

Functional benefit

Products and services

• Social Counseling (Socialrådgivning) Social worker counseling on social legislation affecting people with CF and parents of children with the disease. Free service for association members.
• Psychological Counseling (Psykologrådgivning) Psychologist counseling services for members dealing with cystic fibrosis. Free service for association members.
• Psychosocial Support Services Psychological and social counseling services for children, youth, adults, and relatives affected by cystic fibrosis, including network groups for peer support.
• Familiekursus (Family Course) Annual family course for families with children with CF aged 0-17. Provides knowledge, support, and networking opportunities. Held at Brogaarden in Middelfart with programs for both children and parents.
• Network Groups (Peer-to-Peer) Peer support groups for experience sharing among people affected by cystic fibrosis.
• Online Activities Virtual activities and events for people with CF and their families to participate in remotely.
• Gode Dage Legater (Good Days Grants) Grants for children and adults with CF who are severely affected by the disease and/or cannot participate in other association activities due to resistant bacteria. Funded by foundations, companies, and private individuals.
• Maveløjer og stædige slimklatter (Children's Book) Children's book for ages 5-7 about cystic fibrosis, featuring the mascot Bimle and character Viggo who has CF. Combines story and facts about the body and CF in a child-friendly format.
• Mia og Bimle (Children's Book) Children's book for ages 6-9 with CF and their classmates, developed by Cystic Fibrosis Center at Aarhus University Hospital in 2014.
• Pjecer (Brochures/Pamphlets) Nine brochures covering various life phases with cystic fibrosis including introduction to CF, parents of children with CF, CF in daycare and school, teenagers with CF, transition from child to adult, sexual health and pregnancy, parents with CF, and senior life with CF. Available in digital print-ready format.
• Podcast: Tæt På (Close To) and Ud af mørket (Out of the Darkness) Podcast series featuring personal stories from people with CF (Oleander, age 26) and relatives who lost family members to CF (Jeppe). Also includes 'Ud af mørket' where Cris tells the story of losing his partner Cille to CF. Seven episodes available on Radio Loud.
• Video Content Series Collection of videos covering life with cystic fibrosis including first diagnosis experiences, parenting children with CF, children's perspectives, youth experiences, and adult life with CF.
• Research Support and Advocacy Advocacy and funding support for Danish cystic fibrosis research, working for better treatment access and conditions.
• Livets kode (Life's Code) Knitting Pattern Knitting pattern for a sweater featuring a DNA strand pattern symbolizing cystic fibrosis as a hereditary genetic disease. Proceeds benefit the association.

Quantifiable outcome

• 111 children detected through newborn screening in 10 years
• +1 more outcomes

Named customers15 records

Segments6 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Seven partnerships are on record, tiered core and minor.

• CF EuropecoreStrategic or Co-development PartnerInternational collaboration on access, development, and supply of life-saving treatment for cystic fibrosis. Works together on policy advocacy and research support across European countries.
• Danske HandicaporganisationercoreStrategic or Co-development PartnerNational alliance of disability organizations. Cystisk Fibrose Foreningen participates in patient-political alliances and dialogues through this network.
• Sjældne DiagnosercoreStrategic or Co-development PartnerNetwork of rare disease organizations in Denmark. Collaborates on patient-political alliances and dialogues for rare disease advocacy.
• Cystisk Fibrose Centret på RigshospitaletcoreStrategic or Co-development PartnerOne of Denmark's two specialized CF treatment centers. The association works to maintain and strengthen highly specialized treatment services in collaboration with this center.
• Cystisk Fibrose Centret på Aarhus UniversitetshospitalcoreStrategic or Co-development PartnerOne of Denmark's two specialized CF treatment centers. The association works to maintain and strengthen highly specialized treatment services in collaboration with this center.
• Statens Serum InstitutcoreStrategic or Co-development PartnerConducts newborn screening for CF as part of the national screening program. Coordinates with CF Centers for positive test follow-up.
• BrogaardenminorChannel Partner/ Reseller/ DistributorConference venue provider for annual family courses in Middelfart, Fyn.

Scale indicators5 records

Recent moves6 records

Expansion highlights5 records

Regional players

• Norsk CF-forening (Norway): Norwegian CF patient association providing peer support, information, and advocacy. Highly comparable in scale and service model, serving a similarly small Scandinavian CF population.
• Deutsche CF-Hilfe (Germany): German CF patient organization offering similar services to Danish CFF (counseling, support groups, research funding). Comparable in scope but operates in a larger market and is not a direct competitor due to geography.

Others

• CF Europe: European umbrella organization coordinating CF patient associations across Europe. CFF is a member and works with CF Europe on access and policy; not a direct competitor but an enabling network partner.
• Sjældne Diagnoser (Denmark): Danish rare disease umbrella organization. CFF is a member for joint advocacy; functionally comparable as a chronic/rare disease support non-profit serving the same patient population in Denmark.
• European Cystic Fibrosis Society (ECFS): European professional society focused on CF clinical care and research. Not a direct competitor but adjacent stakeholder that CFF engages with; comparable in CF specialization but different audience (professionals vs. patients).

Direct peers

• Cystic Fibrosis Trust (UK): UK national CF advocacy organization providing information, support, research funding, and campaigning. Operates with very similar mission and service mix (counseling, grants, family events, research funding) as Cystisk Fibrose Foreningen.
• Vaincre la Mucoviscidose (France): French CF patient organization founded by parents, providing research funding, patient support, and advocacy. Strongly comparable as a European national CF non-profit with the same combination of counseling, grants, and research programs.
• Cystic Fibrosis Canada: Canadian national CF organization funding research and providing patient support. Comparable mission and operating model; works closely with CF clinics and offers community programs analogous to Danish family courses.
• Cystic Fibrosis Ireland: Irish national CF advocacy organization providing patient support, advocacy, and research funding. Closely mirrors CFF's model of counseling, grants, and family-facing services for a small national CF population.

Broad incumbents

• Cystic Fibrosis Foundation (US): Largest CF patient advocacy and research funding organization in the US. Directly comparable as a CF-focused non-profit providing research funding, patient services, advocacy, and community programs, but operates at much greater scale and scope.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat4 records

Key risks4 records

Key highlights6 records

Customer concentration

• YouTubeyoutube.com/channel/UCGJr-dTTO3FsrS79lXpnXtw
• LinkedInlinkedin.com/company/cystisk-fibrose-foreningen

Revenue estimate

Valuation estimate

Number of profiles

Profiles1 record

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Cystisk Fibrose Foreningen