Cystic fibrosis (association)
| Cystic fibrosis e. V. Federal Association of Cystic Fibrosis | |
|---|---|
| legal form | society |
| founding | 1965 |
| founder | Adolf Windorfer |
| Seat | Bonn |
| motto | Help, research, cure |
| purpose | Combating cystic fibrosis |
| Action space | Germany |
| people | Stephan Kruip Federal Chairman |
| Website | www.muko.info |
The cystic fibrosis e. V. Bundesverband Cystic fibrosis (CF) is a German club that the fight against incurable disease cystic fibrosis ( English Cystic Fibrosis ) support and wants to promote. To this end, he networks cystic fibrosis patients, their relatives, practitioners such as doctors, therapists, nurses and researchers. The association wants to bundle experiences, skills and perspectives with the aim of enabling everyone affected to live as independently as possible with cystic fibrosis. In Germany around 8,000 children, adolescents and adults are affected by cystic fibrosis. Around 200 children are born with cystic fibrosis each year. The association finances its services almost exclusively through donations.
history
The association was established in 1965 on the initiative of the pediatrician Adolf Windorfer in Nuremberg. Christiane Herzog , the wife of the former Federal President Roman Herzog , was patron from 1986 to 2000 . She also founded the Christiane Herzog Foundation for people with cystic fibrosis . In 2003, the association joined forces with the Federal Association of CF Self-Help under the name of the German Society for Combating Cystic Fibrosis . V. zum Mukoviscidose e. V. together. The physicist and cystic fibrosis patient Stephan Kruip has been the federal chairman of the cystic fibrosis eV since 2014
Chairperson
- Stephan Kruip (since 2014)
- Horst Mehl (1995–2014), affected father, honorary chairman since 2014
- Diethelm Kaiser (1977–1995) pediatrician
- Ulrich Stephan (1973–1977), pediatrician
- Adolf Windorfer (1965–1973), pediatrician
activities
The association operates under the motto "Help.Research.Heal" As a 100 percent subsidiary, the Cystic Fibrosis Institute - a non-profit association for research and therapy development mbH - is run in 2005 . In particular, it supports research projects on the subject of cystic fibrosis.
Support for those affected
- muko.info: Membership magazine and online information
- Expert advice cystic fibrosis ECORN-CF
- muko.fit: psychosocial intervention
- Social law and psychosocial advice
- Climate recovery measures
- Support fund
- House Sturmvogel on the island of Amrum for recreational stays
- Guardian Angel House: patient hostel near Hanover Medical School
- Advice on exercise for cystic fibrosis
- Annual meeting
Support for scientists
- Research Foundation for Cystic Fibrosis (FGM)
- Research funding
Support for doctors and therapists
- Quality management cystic fibrosis:
- Patient registry
- Public Reporting: Voluntary publication of the quality results of the cystic fibrosis treatment facilities
- Benchmarking
- Patient satisfaction survey,
- Quality assurance reporting tape
- Certification procedure for cystic fibrosis treatment facilities (muko.zert)
- German cystic fibrosis conference
- Network for clinical studies on cystic fibrosis: CF-Clinical Trial Network Germany (CF-CTN)
- Working groups of the individual professional groups with corresponding training opportunities
Awards
The association awards the following awards named after Adolf Windorfer :
- The Adolf Windorfer Medal is an award for voluntary commitment in favor of cystic fibrosis patients.
- The Adolf Windorfer Prize is an award for outstanding research work in the field of cystic fibrosis.
Supporters ("Guardian Angel")
- Michaela May
- Marco Schreyl
- Dominik Klein
- Arne Friedrich
- Massimo Sinató
- Thomas Rath (fashion designer)
- Cosma Shiva Hagen
- Mirja Boes
- Steffi Jones
- Klaus Velten
- New York Lions
Web links
Individual evidence
- ↑ Conquering cystic fibrosis together - Annual Report 2013/2014 ( Memento of the original from July 3, 2017 in the Internet Archive ) Info: The archive link was inserted automatically and has not yet been checked. Please check the original and archive link according to the instructions and then remove this notice. Cystic fibrosis e. V., accessed on February 22, 2016.
- ↑ Cystic Fibrosis Institute . ( Memento of the original from March 15, 2015 in the Internet Archive ) Info: The archive link was inserted automatically and has not yet been checked. Please check the original and archive link according to the instructions and then remove this notice. Website of the cystic fibrosis e. V., accessed on March 22, 2015.
- ↑ muko.info: From those affected for those affected ( memento of the original from March 18, 2015 in the Internet Archive ) Info: The archive link was inserted automatically and has not yet been checked. Please check the original and archive link according to the instructions and then remove this notice. , Cystic fibrosis e. V., accessed December 23, 2014
- ↑ Cystic Fibrosis Expert Council , accessed on December 23, 2014
- ↑ muko.fit - an offer for cystic fibrosis patients with critical courses and / or with special psychosocial challenges ( memento of the original from April 5, 2015 in the Internet Archive ) Info: The archive link was inserted automatically and has not yet been checked. Please check the original and archive link according to the instructions and then remove this notice. , Cystic fibrosis e. V., accessed December 23, 2014
- ↑ Social law and psychosocial advice ( memento of the original from April 2, 2015 in the Internet Archive ) Info: The archive link was automatically inserted and not yet checked. Please check the original and archive link according to the instructions and then remove this notice. , Cystic fibrosis e. V., accessed December 23, 2014
- ↑ Climate recovery measures ( Memento of the original from March 17, 2015 in the Internet Archive ) Info: The archive link was inserted automatically and has not yet been checked. Please check the original and archive link according to the instructions and then remove this notice. , Cystic fibrosis e. V., accessed December 23, 2014
- ↑ The support fund of Mukoviszidose e. V. helps ( Memento of the original from April 4, 2015 in the Internet Archive ) Info: The archive link has been inserted automatically and has not yet been checked. Please check the original and archive link according to the instructions and then remove this notice. , Cystic fibrosis e. V., accessed December 23, 2014
- ↑ Offer for those affected: Sturmvogel House on Amrum ( Memento of the original from April 2, 2015 in the Internet Archive ) Info: The archive link has been inserted automatically and has not yet been checked. Please check the original and archive link according to the instructions and then remove this notice. , Cystic fibrosis e. V., accessed December 23, 2014
- ↑ Guardian Angel House in Hanover ( Memento of the original from July 8, 2017 in the Internet Archive ) Info: The archive link was automatically inserted and not yet checked. Please check the original and archive link according to the instructions and then remove this notice. , Cystic fibrosis e. V., accessed December 23, 2014
- ↑ Sport bei CF - Sport vor Ort ( Memento of the original from April 2, 2015 in the Internet Archive ) Info: The archive link was inserted automatically and has not yet been checked. Please check the original and archive link according to the instructions and then remove this notice. , Cystic fibrosis e. V., accessed December 23, 2014
- ↑ Research Community Cystic Fibrosis ( Memento of the original from April 20, 2015 in the Internet Archive ) Info: The archive link was inserted automatically and has not yet been checked. Please check the original and archive link according to the instructions and then remove this notice. , Cystic fibrosis e. V., accessed December 23, 2014
- ↑ Research funding ( Memento of the original from March 18, 2015 in the Internet Archive ) Info: The archive link was inserted automatically and has not yet been checked. Please check the original and archive link according to the instructions and then remove this notice. , Mukoviszidose Institut gGmbH, accessed on December 23, 2014
- ↑ Cystic Fibrosis Register ( Memento of the original from April 30, 2015 in the Internet Archive ) Info: The archive link was inserted automatically and has not yet been checked. Please check the original and archive link according to the instructions and then remove this notice. Mukoviszidose-Institut gGmbH, accessed on December 23, 2014
- ↑ Public Reporting Cystic fibrosis ( Memento of the original from May 22, 2015 in the Internet Archive ) Info: The archive link was inserted automatically and not yet checked. Please check the original and archive link according to the instructions and then remove this notice. Mukoviszidose-Institut gGmbH, accessed on December 23, 2014
- ↑ Cystic fibrosis benchmarking project ( Memento of the original from May 22, 2015 in the Internet Archive ) Info: The archive link was inserted automatically and has not yet been checked. Please check the original and archive link according to the instructions and then remove this notice. Mukoviszidose-Institut gGmbH, accessed on December 23, 2014
- ↑ 2011 nationwide patient satisfaction survey ( memento of the original from May 22, 2015 in the Internet Archive ) Info: The archive link was inserted automatically and has not yet been checked. Please check the original and archive link according to the instructions and then remove this notice. Mukoviszidose-Institut gGmbH, accessed on December 23, 2014
- ↑ Reporting volume quality assurance cystic fibrosis 2011 ( Memento of the original from February 8, 2016 in the Internet Archive ) Info: The archive link was inserted automatically and has not yet been checked. Please check the original and archive link according to the instructions and then remove this notice. , Mukoviszidose-Institut gGmbH, accessed on December 23, 2014
- ↑ Certification procedure for cystic fibrosis treatment facilities ( page no longer available , search in web archives ) Info: The link was automatically marked as defective. Please check the link according to the instructions and then remove this notice. , Mukoviszidose Institut gGmbH, accessed on December 23, 2014
- ↑ German Cystic Fibrosis Conference ( Memento of the original from March 18, 2015 in the Internet Archive ) Info: The archive link was inserted automatically and has not yet been checked. Please check the original and archive link according to the instructions and then remove this notice. , Cystic fibrosis e. V., accessed December 23, 2014
- ↑ CF-Clinical Trial Network Germany ( Memento of the original from March 18, 2015 in the Internet Archive ) Info: The archive link was automatically inserted and not yet checked. Please check the original and archive link according to the instructions and then remove this notice. , Cystic fibrosis e. V., accessed December 23, 2014
- ^ Working groups of the Mukoviszidose e. V. ( Memento of the original from March 17, 2015 in the Internet Archive ) Info: The archive link was inserted automatically and has not yet been checked. Please check the original and archive link according to the instructions and then remove this notice. , Cystic fibrosis e. V., accessed December 23, 2014
- ↑ cystic fibrosis e. V. awards Windorfer Prize for outstanding research work ( Memento of the original from March 20, 2014 in the Internet Archive ) Info: The archive link has been inserted automatically and has not yet been checked. Please check the original and archive link according to the instructions and then remove this notice. , Cystic fibrosis e. V., accessed on March 20, 2014.
