Cystic Fibrosis
Mukoviszidose e.V. is the federally recognized German nonprofit patient association for cystic fibrosis, founded in 1965 and headquartered in Bonn. It serves CF patients and families across Germany through counseling, research funding, a national patient registry, clinical trial coordination, climate therapy, and advocacy, funded almost entirely by donations.
- Company typePrivate
- Founded1965
- HeadquartersBonn, Germany
- Headcount11–50
- GTM typeB2C
- OfferingServices
What Cystic Fibrosis does
Mukoviszidose e.V. — Bundesverband Cystische Fibrose (CF) is a federally recognized, membership-based German nonprofit association (eingetragener Verein) founded in 1965 and headquartered in Bonn. Its mission is to serve people with cystic fibrosis and their families across Germany through a comprehensive suite of programs spanning psychosocial and legal counseling, psychological support, expert medical advice via the ECORN-CF network, sports and rehabilitation counseling under the MUKOfit program, climate therapy at Haus Schutzengel and on Gran Canaria, and emergency financial assistance through the Unterstützungsfonds and Gesundheitskosten-Soforthilfe. The organization is the national convening body for CF, coordinating with regional self-help groups, specialized working groups (AK Sport, AK Ernährung, AK Pflege, AK Physiotherapie, AK Psychosoziales, AK Rehabilitation), and the Forschungsgemeinschaft Mukoviszidose (FGM) research community.
The organization's core programmatic assets include the German CF patient registry (Register/MUKOme), a clinical trial network (Studiennetzwerk) coordinating ongoing studies, the Adolf-Windorfer-Preis research award, and a content library spanning the MUKOinfo magazine, podcast, clinical guidelines (Leitlinien), and the muko.assisto.online digital counseling platform. Technology infrastructure is limited to standard digital channels: a website (muko.info), blog (blog.muko.info), online consultation system, and ActiveCampaign-managed newsletters. The association also publishes educational content on diagnostics (newborn screening, sweat test, genetic testing) and CFTR modulator therapies (Kaftrio, Alyftrek, Kalydeco, Orkambi), and runs major recurring events including the Deutsche Mukoviszidose Tagung (DMT), Scientific Meeting (ScieM), and MUKOmiteinander community weekend.
Mukoviszidose e.V. is funded almost exclusively through donations from individuals, companies, and institutions, supplemented by membership fees, a publications/merchandise web shop, and modest event fees such as the EUR 60 CF-Erwachsenentagung charge. The organization is led by Bundesvorsitzender Stephan Kruip with deputies Dr. Christina Smaczny and Gerd Eißing, and managed operationally by Managing Directors Dr. Katrin Cooper (Fundraising, PR, Finance) and Dr. Miriam Schlangen (Research, Therapy Promotion, Health Policy). It is governed by its members through a Mitgliederversammlung, holds membership in the Initiative Transparente Zivilgesellschaft for transparency accountability, and operates exclusively within Germany.
Cystic Fibrosis firmographics
Firmographics- Name
- Cystic Fibrosis
- Legal name
- Mukoviszidose e.V. – Bundesverband Cystische Fibrose (CF) – Gemeinnütziger Verein
- Website
- https://muko.info
- Company type
- Private
- Founded year
- 1965
- Operating status
- Operating
- Headcount range
- 11–50 employees
- Short description
- Mukoviszidose e.V. is the federally recognized German nonprofit patient association for cystic fibrosis, founded in 1965 and headquartered in Bonn. It serves CF patients and families across Germany through counseling, research funding, a national patient registry, clinical trial coordination, climate therapy, and advocacy, funded almost entirely by donations.
- Ownership category
- akta.pro rank
Cystic Fibrosis industry classification
Industry- Product category
- Patient Advocacy and Healthcare Non-Profit
- NAICS
- Other Similar Organizations (except Business, Professional, Labor, and Political Organizations) (813990)
- SIC
- Services-Misc Health & Allied Services, Nec (8090)
- akta.pro primary industry
- Cystic Fibrosis & Bronchiectasis Care (HLAKANAK)
- akta.pro secondary industry
- Infectious Disease Telemedicine Platforms (HLALAGAJ)
Keywords
Where Cystic Fibrosis is headquartered
LocationHeadquarters
- HQ city
- Bonn
- HQ country
- Germany
- HQ region
- Europe
Offices1 record
Markets served
Cystic Fibrosis business model
Business model- GTM type
- B2C
- Offering type
- Services
- Cost components
- Personnel, Operations, Marketing or Sales, Technology or R&D, Others
Revenue model
- Donations: The organization finances itself almost exclusively through donations from individuals, companies, and institutions. Multiple donation channels are available including online donations, direct bank transfers, corporate giving, memorial donations, and legacy/bequest donations.
- Membership fees: The association has a membership program for people with CF and their family members, providing community engagement and participation in association activities.
- Publications and merchandise sales: The organization operates a web shop selling publications, brochures, and merchandise related to CF awareness.
Pricing tiers
| Model | Billing | Price |
|---|---|---|
| One time/ perpetual license | Multi-year contract | CF-Erwachsenentagung participation |
Go-to-market motion1 record
Distribution channels4 records
Marketing channels7 records
Cystic Fibrosis product offering
Product offeringCore offering
Mukoviszidose e.V. is a German non-profit patient advocacy organization that provides comprehensive counseling, support, and information services for people with Cystic Fibrosis and their families. It funds and coordinates CF research through the Forschungsgemeinschaft Mukoviszidose (FGM), operates the German CF Patient Register (MUKOme), runs a clinical trial network, publishes the MUKOinfo magazine and podcast, and hosts national conferences and community events.
Product overview
Mukoviszidose e.V. is a non-profit patient advocacy organization offering a comprehensive suite of support services for people with cystic fibrosis and their families. The organization provides psychosocial and legal counseling, psychological support, sports counseling, emergency financial assistance, and specialized facilities including the Haus Schutzengel climate therapy resort. Core programs include a patient registry (Register/MUKOme), a clinical trial network (Studiennetzwerk), and substantial research funding including the Adolf-Windorfer Prize. The organization publishes the MUKOinfo magazine and podcast, organizes major conferences including the annual Deutsche Mukoviszidose Tagung and CF-Erwachsenentagung, and hosts the biennial MUKOmiteinander community event. Specialized working groups (AK Sport, AK Rehabilitation, FGM) advance best practices in physical activity, rehabilitation medicine, and scientific research. The organization also coordinates group and individual climate therapy measures on Gran Canaria.
Differentiator
Problem solved
Functional benefit
Brands
- MUKOmiteinander: A community weekend event for the CF community, next scheduled for September 5-6, 2026 in Leipzig.
- Forschungsgemeinschaft Mukoviszidose (FGM)
- Haus Schutzengel
- MUKOfit
- MUKOme
- MUKOinfo
Products and services
- Beratung und Unterstützung (Counseling and Support Services) Comprehensive counseling and support services for people with Cystic Fibrosis and their families, including psychosocial and legal counseling, psychological support, sports counseling, MUKOfit fitness program, expert advice hotline, diagnostic phone support, and emergency financial assistance funds (Unterstützungsfonds and Gesundheitskosten-Soforthilfe).
- Forschungsförderung (Research Funding) Research funding program providing project grants, the Adolf-Windorfer Prize for outstanding research achievements, and support for clinical studies through the study network, targeting CF researchers and clinicians.
- Register (German CF Patient Registry / MUKOme) German cystic fibrosis patient registry collecting clinical data from medical professionals and patients (MUKOme program) to improve CF care and research outcomes across Germany.
- Studiennetzwerk (Clinical Trial Network) Network coordinating ongoing clinical trials for cystic fibrosis treatments and therapies, connecting investigators, clinicians, and patients across Germany.
- Haus Schutzengel Specialized respite facility operated by Mukoviszidose e.V. offering climate therapy measures and respite stays for people with cystic fibrosis in Germany.
- Klimamaßnahmen (Climate Therapy Measures) Group and individual climate therapy programs, including stays on Gran Canaria, designed to improve respiratory health for CF patients.
- Deutsche Mukoviszidose Tagung (DMT) Annual German cystic fibrosis conference for medical professionals, researchers, and patients featuring scientific sessions, industry exhibitions, and beginner seminars.
- CF-Erwachsenentagung (CF Adult Conference) Annual weekend conference for adult CF patients (16+), their partners, siblings, and friends, held in October in Hannover, with a 60 Euro participation fee.
- MUKOmiteinander Biennial community weekend event bringing together the CF community for shared experiences, scheduled for September 5-6, 2026 in Leipzig.
- AK Sport (Sports Working Group) Working group promoting physical activity and sport as essential components of CF therapy, developing guidelines and patient brochures for CF patients and caregivers.
- AK Rehabilitation (Rehabilitation Working Group) Working group ensuring optimal rehabilitation care for CF patients and improving understanding of rehabilitation medicine for chronic diseases, collaborating on hygiene standards, certification procedures, and cross-infection risk studies.
- Forschungsgemeinschaft Mukoviszidose (FGM) Research community comprising scientists and clinicians working to strengthen and advance cystic fibrosis research, providing advisory services on research applications to Mukoviszidose e.V.
- Online-Beratung (Online Counseling) Digital counseling platform (muko.assisto.online) providing accessible online support services to people with CF and their families.
- MUKOinfo (Publications) Organization's informational magazine and publications covering topics related to living with CF, research updates, and patient stories; available through the web shop.
Companies that use Cystic Fibrosis
Customer profileNamed customers3 records
Segments1 record
Ideal customer profiles5 records
Cystic Fibrosis technology and API
TechnologyTechnology focussed No
API detail
- Has API
- No
- API docs
- API detail
Core technology
AI maturity
App detail
Cystic Fibrosis partnerships and signals
Strategic signalPartnerships
Six partnerships are on record, tiered core and minor.
- ECORN-CFcoreECORN-CF (European Clinical Research Organization Network for Cystic Fibrosis) provides an expert advice system allowing CF patients and families to submit questions to CF experts across Europe, extending the association's consultation services with specialized medical expertise.
- Patient ScienceminorPatient Science partnership focused on involving patients in research processes and promoting patient-centered outcomes in CF research.
- PANDORAminorPANDORA is a research partnership/project referenced in the organization's cooperation section, contributing to collaborative CF research initiatives.
- Europäische Zusammenarbeit (European Cooperation)coreThe association engages in European cooperation for CF, collaborating with European CF societies and participating in continent-wide initiatives including ECFS (European Cystic Fibrosis Society) conferences held in locations like Lisbon.
- Rehabilitation clinics (founding members: Satteldüne/Amrum, Tannheim, Borkum Riff, Nordseeklinik Borkum, Fachklinik Wangen, Kinder-Reha-Klinik Bad Koesing)coreKey rehabilitation facilities that founded the AK Rehabilitation working group in 2004 to ensure optimal rehabilitation care for CF patients. These clinics collaborate on hygiene standards, certification procedures, and cross-infection risk studies.
- BAG SELBSTHILFE e.V.minorThe Federal Association for Self-Help Organizations (BAG SELBSTHILFE) represents the interests of self-help groups in Germany, and the Mukoviszidose e.V. collaborates on policy advocacy as seen in responses to government reform packages.
Scale indicators1 record
Recent moves6 records
Expansion highlights5 records
Cystic Fibrosis competitors and assessment
Company assessmentDirect peers
- Vaincre la Mucoviscidose: France's principal CF patient organization. Directly comparable as a French national, donation-funded CF charity running research grants, family support, and a CF registry — operating with a similar mission and stakeholder mix to Mukoviszidose e.V.
- Cystic Fibrosis Foundation: The largest CF patient advocacy organization globally, based in the US. Directly comparable as a nonprofit driving CF research funding, care centers, patient registry, and clinical trial network — operating as a disease-specific advocacy organization similar to Mukoviszidose e.V. but in the US.
- Cystic Fibrosis Trust: The UK's national CF charity, providing research funding, support services, and a patient registry. Closely analogous structure to Mukoviszidose e.V. — a country-specific, donation-funded CF patient organization with research and advocacy arms — making it a direct operational peer.
- European Cystic Fibrosis Society (ECFS): Pan-European professional/scientific society for CF clinicians and researchers, running the European CF Registry and ECFS annual conference (e.g., Lisbon). Directly comparable as a CF-specific convening and registry operation that Mukoviszidose e.V. both partners with and competes against for European visibility.
Emerging players
- ACHSE e.V. German Alliance for Chronic Rare Diseases, an umbrella for ~130 patient organizations including rare disease advocacy. Comparable as a German nonprofit health advocacy body coordinating policy, awareness, and research funding — partly overlapping with Mukoviszidose e.V.'s policy and advocacy function at the rare-disease level.
Regional players
- Cystic Fibrosis Canada: Canada's national CF charity, funding research and providing patient support. Similar mission, structure, and donation-funded model, but operating in a different geography with no direct competition given Mukoviszidose e.V.'s Germany-only scope.
- Cystic Fibrosis Australia: Australia's national CF consumer organization, running research, advocacy, and support services. Mirrors the German organization's structure and activities but serves the Australian CF community rather than competing in the German market.
Market position
Strengths4 records
Weaknesses4 records
Competitive moat6 records
Key risks5 records
Key highlights7 records
Customer concentration
Cystic Fibrosis social profiles
Digital presenceCystic Fibrosis financial estimates
Financial estimateRevenue estimate
Valuation estimate
Cystic Fibrosis leadership team
Management profileNumber of profiles
Profiles13 records
Cystic Fibrosis funding detail
Funding detailFunding overview
Funding rounds
Investors
Funding detail is available on the Subscription and Enterprise plan.Contact sales →
Cystic Fibrosis M&A and investment
M&A and investmentM&A
Investments
M&A and investment is available on the Subscription and Enterprise plan.Contact sales →
Frequently asked questions about Cystic Fibrosis
What does Cystic Fibrosis do?
Mukoviszidose e.V. is a German non-profit patient advocacy organization that provides comprehensive counseling, support, and information services for people with Cystic Fibrosis and their families. It funds and coordinates CF research through the Forschungsgemeinschaft Mukoviszidose (FGM), operates the German CF Patient Register (MUKOme), runs a clinical trial network, publishes the MUKOinfo magazine and podcast, and hosts national conferences and community events.
Is Cystic Fibrosis a public or private company?
Cystic Fibrosis is a private company. It is classified as nonprofit foundation owned and is currently operating.
When was Cystic Fibrosis founded?
Cystic Fibrosis was founded in 1965. It employs 11 to 50 people.
Where is Cystic Fibrosis based?
Cystic Fibrosis is headquartered in Bonn, Germany, in the Europe region.
How does Cystic Fibrosis make money?
Three revenue lines are on record. Donations are the primary driver. The others are membership fees and publications and merchandise sales.
Who are Cystic Fibrosis's main competitors?
Direct peers on record are Vaincre la Mucoviscidose, Cystic Fibrosis Foundation, Cystic Fibrosis Trust and European Cystic Fibrosis Society (ECFS). ACHSE e.V. is listed as an emerging player. Regional players are Cystic Fibrosis Canada and Cystic Fibrosis Australia.
Does Cystic Fibrosis have an API?
No public API is recorded for Cystic Fibrosis.
What industry is Cystic Fibrosis in?
Cystic Fibrosis's product category is Patient Advocacy and Healthcare Non-Profit. Its primary akta.pro industry code is HLAKANAK, Cystic Fibrosis & Bronchiectasis Care, with a secondary code of HLALAGAJ, Infectious Disease Telemedicine Platforms. Its NAICS code is 813990 and its SIC code is 8090.