ECHDO Meetings

ECHDO delegates from right across Europe came together for the 2010 Annual Meeting hosted by the Children’s Heart Federation in London.

View the programme of activities and the list of organisations that took part.

The meeting was very successful in its main aims:

• Getting ECHDO firmly established to conduct its business by electing a new Board and agreeing changes to its legal documents
• Creating opportunities for delegates to fulfil ECHDO’s mission:
• To share information and experiences in order to improve access to the best possible care and treatment for all people affected by CHD in Europe
• Having fun!

The meeting took place near Waterloo and London’s South Bank at a conference venue called 15 Hatfields.

View the London meeting gallery

The Barcelona meeting in June had two parts. On the first day of the meeting, many of the delegates participated in a Rare!Together network workshop organised by EURORDIS and sponsored by the Medtronic Foundation. In a parallel workshop, the other delegates discussed how to improve “life with a heart defect” throughout Europe and in the individual countries.

The second day was the 4th ECHDO/Corience meeting, where issues like the future of the Corience website and the next steps for ECHDO were discussed. The meeting also included a compelling session on medical presentations. Prof. Dr. Hess from the German Heart Centre in Munich talked about the Melody valve, a new procedure to replace a pulmonary valve without the need for open-heart surgery. Ines Hartwig-Zaidan from MTBASA in Berlin talked about self-management of anticoagulation for children and adults on blood thinning drugs.

Although new members are joining, Hermine Nock and ECHDO continue to reach out. ”We are trying to find groups supporting patients and families affected by CoHD in Latvia, Malta, Portugal, Slovakia and the former Yugoslavian countries. Please contact us!” says Hermine Nock.

During various guided workshops, the delegates were given the opportunity to get in touch with similar organisations from all over Europe. They were able to exchange experiences and learn from other organisations’ success stories. The meeting connected all members of the community to enhance debate and discussion about important issues. Central topics included the development of network cooperation and lobbying both locally and at a European level.

Surgeons and cardiologists from renowned medical centres across Europe presented new developments in the treatment of Congenital Heart Disease (CHD), reported on clinical trials to achieve better drug safety, and discussed the individual legal rights of children who take part in clinical studies.

Download the ECHDO information flyer and press release

The second ECHDO-meeting took place on the occasion of the meeting of the psycho-social working group of the AEPC (Association for European Paediatric Cardiology) in Bruges/Belgium from 27-29th February 2007.

You can request the meeting minutes at bvhk-aachen@t-online.de

• Download "Task Force for adults with congenital heart defect"
• Download "Resource allocation for the GUCH-patients, why is it necessary?"

The first ECHDO meeting was organised by the German Bundesverband Herzkranke Kinder e.V. and supported by German Kompetenznetz Angeborene Herzfehler.

• Eva-Luise Köhler, First Lady and patroness of ACHSE (Alliance of chronically rare diseases) sent words of welcome, saying that she esteemed the idea of a European network as a very important one. She also asked ECHDO to help solving existing problems especially in the research of CHD.
• The patroness of the Kompetenznetz Angeborene Herzfehler, Friede Springer, congratulated the representatives on their European idea.
• Dr. Gabriele Hausdorf from the German ministry of research and education is also supporting the network and said she was convinced that it should be used as a model for other chronic congenital disease organisations.
• Dr. András Szatmári, PhD, Hungary, President of the Association for European Paediatric Cardiology (AEPC) said he was looking forward to achieving standardised treatment and education of doctors within Europe with the support of patients groups.
• Lastly Prof. Hans Heiner Kramer, Kiel, president of the German Association of Paediatric Cardiology, underlined the importance of the united self-help-organisations as a pressure group in the struggle for improved treatment of CHD.