European networking activities proliferate

“It feels good to finally have agreed on the bylaws,” says Hermine Nock from Bundesverband Herzkranke Kinder e.V. in Germany. “I am also happy that we’ve set up groups for fundraising and on how to treat this in a transparent and legal way.” Hermine Nock is a spokesperson for ECHDO, the network of self-help groups for congenital heart disease in Europe. ECHDO (European Congenital Heart Disease Organisation) also cooperates with Corience, the congenital heart defect communication project funded by the European Union that supports networking across Europe as well as ECHDO activities.

Expanding network

Since the first meeting in 2007, the number of countries participating in ECHDO has increased from 13 to 22. Several countries are represented with more than one organisation. Since the last meeting in Berlin in November 2008, 4 new member organisations have joined the network. Some of them did not even exist last year! Earlier this year, Corience presented the new CoHD organisation in Lithuania. Another new member is the Italian GUCH Association AICCA. The Italian psychologist Edward Callus was so inspired by the idea of ECHDO/Corience that he started a whole new organisation that was founded in April this year. “I attended the meeting in Bruges last year, and it was so inspiring,” Callous recalls. “Together with my colleagues I searched everywhere for a patient or parents’ organisation in Italy to cooperate with, but we could not find one. Thus, we took the initiative because there was no one else to do it – but we want this organisation to be run by the patients themselves. To make it work, we need to cooperate, like in ECHDO/Corience, and we need better communication between doctors and other professionals and patients.”

Edward Callus, Italy, talking to Corience journalist Marit Haugdahl from Norway.

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 Fundation. 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 3rd 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 Center 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.

Edyta Paradzinska (Poland), Malgotzata Pawlowska (Luxembourg), Maria Pawlus (Italy) and Aleksandra Lignar-Czyz (Poland) were all born in Poland, but represented three different countries at the ECHDO/Corience meeting in June.

“I am so excited because I met so many people like me, who share my goals,” Malgotzata Pawlowska from Luxembourg exclaimed. “It is wonderful! I am a multi-national, I was born in Poland and my children were born in France. We need to cooperate throughout Europe. This meeting offered everything I expected, and we want and need more meetings like this!” .

Author: Marit Haugdahl