Events KLR foundation (KLR e.V.)

23.3.2018 Business meeting of the KLR group and the chILD-EU assembly during the 40th annual meeting of the Society of Pediatric Pneumology (GPP) in Vienna
9.-13.9.2017 KLR Foundation, chILD-EU register and COST business meeting of the members ERS congress, Milano 2017
30.3.2017 Business meeting of the KLR group and the chILD-EU assembly during the annual GPP meeting in Essen
5.9.2016 KLR Foundation and chILD-EU register business meeting of the members ERS congress, London 2016
10.3.2016 Business meeting of the KLR group for rare lung diseases during annual GPP meeting in Dresden
26.-30.9.2015 KLR Foundation and chILD-EU register business meeting of the members ERS congress, Amsterdam 2015
5.3.2015 Business meeting of the KLR group for rare lung diseases during the annual GPP meeting in Basel
6.-10.9.2014 ERS Congress in Munich. Business meeting of the working group and update of the chILD-EU project: Orphans Unite - chILD better together? European Management Platform for Childhood Interstitial Lung Diseases
26.-29.3.2014 Business meeting of the KLR group for rare lung diseases during the 36th annual GPP meeting in Bremen
26.3.2014 KLR foundation: General Meeting of members during the annual GPP meeting in Bremen
9.9.2013 ERS Congress in Barcelona. Business meeting of the working group and update of the chILD-EU project: Orphans Unite - chILD better together? European Management Platform for Childhood Interstitial Lung Diseases.
7.-9.3.2013 Business meeting of the KLR group for rare lung disesases during the 35th annual GPP meeting in Lübeck
7.3.2013 KLR foundation: General Meeting of members during the annual GPP meeting in Lübeck.
1.-3.03.2012 Business meeting of the KLR group for rare lung diseases during the 34th annual GPP meeting in Cologne
1.3.2012 KLR foundation: General Meeting of members during the annual GPP meeting in Cologne
Summer 2012 Working group on lung biopsies meeting in Frankfurt

31.3.-2.4.2011

Business meeting of the KLR group for rare lung diseases at the GPP in Graz

4.-6.3.2010

Meeting of the group of rare pediatric lung diseases at the 32nd annual meeting of the Association of Pediatric Pneumology (GPP) in Berlin

4.3.2010

KLR foundation: General Meeting of members and symposium during the anual meeting of the GPP in Berlin

16.11.2009

 

 

 

 

 

 

 

 

 

 

 

 

 

Since 1993

Inaugural meeting and symposium of the Kids Lung Register foundation

 

On the 16th of November 2009 the inaugural meeting of the registered association Kids Lung Register (Kinderlungenregister e. V.) for improvement of patient care for children with orphan lung diseases was held. The goals of the kids lung register are the promotion and advancement of the pathophysiological basics, diagnostics, therapy, prophylaxis and epidemiology of all rare lung diseases in childhood and adolescent.


With the association as organising institution a register with biobank for the registration of orphan lung diseases in childhood and adolescent shall be established. The pediatric register is part of the competence network GOLD.net, which is sponsored by the Federal Ministry for Education and Research within the program for promotion of competence networks in medicine for a defined period of time. Concern of the network is to establish and perpetuate a German register with biobank for diffuse parenchymal lung diseases, as well as making the data available for research purposes.


Within the inaugural meeting a symposium about the current studies in the field of rare lung diseases in childhood and adolescent was held. In this context Dr. med. Nicolaus Schwerk from the Medical University Hannover presented first results of a retrospective long term study concerning the course of rare lung diseases in children. The results of the study are supposed to be published in 2011. Dr. med. Johannes Schulze from the Johann Wolfgang Goethe University Clinic reported on interstitial lung diseases in children with Louis-Bar-Syndrome. Because of the rarity of the disease there are no systematic studies on the diagnosis, therapy, prognosis and course in this patient group, like in most of the rare lung diseases. Goal of the Kids Lung Register is to meet the pressing needs of better patient care and research in this area.

The Kids Lung Register institutionalized a long standing investigation of rare children´s lung diseases. Since 1993 clinical cases treated at the Pediatric Pneumology Department of the Dr. von Haunersches Kinderspital or national and international referrals were systematically analyzed ("Balothek") and helped on clinically and scientifically. Initial projects and publications focussed on impairment of the pulmonary surfactant system in children from the interstitial lung disease spectrum.