Um die Versorgung der kleinwüchsigen Menschen dem heutigen Wissensstand anzupassen, betreibt der BKMF seit Sommer 2007 das Deutsche Zentrum für Kleinwuchsfragen ( DZK ) in Bremen. In diesem Zentrum werden die interdisziplinäre, bundesweite Information vorangetrieben sowie Beratungen und Schulungen von Betroffenen, Angehörigen, Fachleuten, Therapeuten, Organisationen und Institutionen zum Thema Kleinwuchs mit seinen vielfältigen Auswirkungen, Besonderheiten und Erfordernissen durchgeführt.
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Invitation to talks concerning consultation and cooperation between organisations for people with restricted growth in the EU
Dear ladies and gentlemen,
The German patient-organisation for people with restricted growth and their families, "Bundesverband Kleinwuchsige Menschen und ihre Familien e.V. – BKMF" has always been interested in the learning about other similar organisations – worldwide and they are also interested in sharing their own knowledge with other organisations.
As a member of the European Organisation for Rare Diseases (EURORDIS) and also as a co-founder of the International Growth Federation the organisation thinks that the idea of a revival of international cooperation is important.
During our yearly conference from 1st May to 4th May we would like to discuss, with European and worldwide organisations, problems of people with restricted growth. One important aspect of these discussions will be the question of how the patient - associations can contribute and participate on a European level.
We invite you to attend the international meeting on 2nd May 2008 during our yearly conference. The meeting language will be English. English speaking people will be able to help with translations. The conference will take place at:
9.30 – 10.00
Welcome speech by Doris Michel, chairwoman of BKMF and Dr. Nora Vaupel, staff member of BKMF for Skelnet (German Skeletal Dysplasia Network)
Statement by Prof. Dr. Andrea Superti-Furga, medical chair of the Center for Pediatrics and Adolescent Medicin, University of Freiburg, and member of the European
Skeletal Dysplasia Network (ESDN)
Chairwoman: Dr. Nora Vaupel, Jérôme Ries, BKMF staff member in the project "Networking for occupational integration"
10.00-12.00 Introductions of participants and their organisations
12.00-14.00 Dinner, talks
14.00-18.00 Suggestions for discussion topics:
Visions for the future
20.00 sociable meeting
Kindly supported by Pfizer Europe
You are also invited to take part in the rest of our conference, which will be held in German, however.
While we would expect that the various organisations pay for their own travel, we are prepared to pay for your stay. Organisations which are unable to fund their travel, please contact the German Center for Restricted Growth under:
Dr. Nora Vaupel: 0421/33 61 69-21
Jérôme Ries: 0421/33 61 69-23
Cornelia Kulenkampff: 0421/33 61 69-25
We would be delighted to welcome representatives of various organisations. We are sure this will be the first step for cooperation in many fields. If you are interested in participating or if you have further questions, please don’t hesitate to contact us (see above).
Doris Michel Ruzena Klingebiel
Chairwoman BKMF Manager BKMF