Kartagener Syndrome & Primary Ciliary Dyskinesia
| Kartagener Syndrome & Primary Ciliary Dyskinesia e. V. Federal Association KS & PCD | |
|---|---|
| legal form | society |
| founding | 1997 |
| Seat | Kaiserslautern |
| motto | Help Research Relieve |
| main emphasis | PCD and Kartagener Syndrome |
| Action space | Europe and Turkey |
| Members | > 400 |
| Website | www.kartagener-syndrom.de |
The Kartagener Syndrome & Primary Ciliary Dyskinesia e. V. (KS & PCD e. V.) is a Germany-wide active association . Other members come from Austria and the German-speaking part of Switzerland as well as from Greece . The association has set itself the goal of improving the quality of life of patients with primary ciliary dyskinesia or Kartagener syndrome and the quality of life of their relatives. This is done by collecting information, networking those affected, self-help groups, doctors, physiotherapists and clinics as well as promoting the exchange of experiences with one another.
The frequency of being born with primary ciliary dyskinesia is 1 in 16,000 to 20,000. In addition, 50% of those affected have a situs inversus, a mirror image (reversed) structure of the internal organs. The association finances its services exclusively through grants and donations.
history
The association was founded in 1997 by those affected and their families.
Jens Brillault has been the chairman since 2016.
Chairperson
- Jens Brillault
- Reiner Pier (until 2016)
- Bernhard Rindlisbacher (until 2013)
- Ralf-Willi Frank (until 2011)
- Rüdiger Fürle (until 2007)
- Anne Ulmer (until 2005)
- Susanne Shahin (until 2001)
purpose
The purpose of the association is to improve the quality of life of patients with primary ciliary dyskinesia and Kartagener syndrome and their relatives, especially through
- Gathering information about symptoms of the disease, early detection and modern therapeutic options,
- Creation and dissemination of information material for those affected, their families, for medical professionals and the public,
- Collaboration with those affected, self-help groups, doctors and clinics (including support in the creation of scientific publications on diagnostics and therapy),
- Encourage the exchange of experiences between the members - together or in subgroups separated according to the extent to which they are affected (adults with partner, parents, affected children with siblings and friends),
- Organizing events for those affected and for medical professionals,
- Establishing, promoting and accompanying regional self-help groups within the association.
Since the disease is still relatively unknown to many doctors and the symptoms are similar to other respiratory diseases (chronic bronchitis, asthma and cystic fibrosis), the work of the association should help to draw the doctors' attention to this disease so that the diagnosis is thus as early as possible and the subsequent targeted drug and physical therapy can be started.
Structures
- Board
- Medical-scientific advisory board
- Funding Council
- Regional groups
- Working groups (AGs)
Support for those affected and their relatives
- Members' magazine (Zilienfokus)
- Members forum
- Contact Person
- Information provided on the homepage
- Support from Bestcilia
- Annual meeting
Awards
The association awards the following award named after Manes Kartagener , the Manes-Kartagener Prize for outstanding research in the field of primary ciliary dyskinesia and the Kartagener syndrome.
Web links
Individual evidence
- ↑ Purpose of the association . KS & PCD e. V., accessed on January 2, 2015.
- ↑ Nüßlein, T. / Brinkmann, F. / Ahrens, P. / et al .: Diagnostics of primary ciliary dyskinesia Recommendations in collaboration with Kartagener Syndrome and Primary Ciliary Dyskinesia e. V. In: Monthly Journal for Paediatrics 161 (5): 406-416 (2013).
- ↑ Board of Directors . KS & PCD e. V., accessed on January 2, 2015.
- ↑ Medical-Scientific Advisory Board . KS & PCD e. V., accessed on January 2, 2015.
- ↑ Funding Council . KS & PCD e. V., accessed on January 2, 2015.
- ↑ regional groups . KS & PCD e. V., accessed on January 2, 2015.
- ↑ Working groups . KS & PCD e. V., accessed on January 2, 2015.
- ↑ BESTCILIA . Bestcilia.eu, accessed January 2, 2015.
- ↑ Annual meeting . KS & PCD e. V., accessed on January 2, 2015.