Newsletter 18/12/2019

Dear members,                                                                                                                                                                           

It will soon be that time of the year again, when we will be soon able to enjoy the Christmas spirit. The year is approaching to its end and what a year it has been for ECHDO!
As you are aware, we have been battling with administrative issues for some years. At last it seems, that we have conquered them and we could not have achieved it without the help of White & Case, and especially Eline Souffriau. With their help, we finally have an independent address, previous board decisions which were not valid have been ratified, the statutes of the association have been updated and we also have Econtrol of our bank account.

Articles of the Association

You can find the minutes of the previous AGM enclosed in this newsletter.  You can find the updated Articles of the Association enclosed in the minutes. AoA can be also found from on the ECHDO website:
In order to update ECHDO’s statutes, we needed to have the extraordinary annual general meeting and last spring we asked our members to send the proxies to be presented in the meeting. Unfortunately, we were not able to get proxies from all the members and due to that, we lost some of our members from Austria, Belgium, Bulgaria, France, Greece, Lithuania, Poland and Switzerland. It is very unfortunate, but we hope that they will come back later and if they decide to do so, we wish them more than welcome! 
Since ECHDO is registered in Belgium, we work under the Belgium law. Because the official address needs to be stated in the statutes and we changed the address, it meant that also that the statutes needed to be changed. During that process we went through other points, which needed the update. One of the key elements which was changed, was the membership and the role of the members. Now after the update, we also have the possibility to have associated members, which have limited rights on the AGM, but they still have the right to participate and contribute. This is a very welcome change especially with the members with a poor economic situation. Earlier our statutes said that all the members need to be present on the AGM either by proxy or a representative, which caused a lot of administrative difficulties. During the process, one other key objective was to make ECHDO more attractive to groups representing adults with congenital heart defects. That we have most definitely achieved, since after the AGM, we have three new members; two representing adults with CHD from Israel and Switzerland, and one group from Luxembourg representing both parents and patients. You are more than welcome to join our heart family! At the moment, we have 30 members all over Europe.

Registration open to AGM

As you are probably aware, the next AGM will be held in Milan, on the 27-28th of March 2020. Prior to the AGM there will be AEPC’s psycho-social working group’s meeting (25–27th of March) and we recommend that organisations join both meetings, if possible. More details about this meeting are available from the following link: Enclosed in the newsletter you can find the official invitation, instructions and registration information. All the necessary information is on the ECHDO website:, where you can also fill up the registration form. The registration ends on the 6th of March. 
Attached you can find the preliminary program, which you hopefully find interesting. During the meeting we would like to give our members a possibility to present and share your “showcase” projects as a learning point for all of us. So, if you have an interesting project, which you would like to present, please don’t hesitate to contact the board as soon as possible! The time available is limited, but we hope many of you will use this opportunity! Our goal is, that in the future we will open a platform, which helps us share our projects.
If needed, you can apply for a bursary to cover some of the travelling cost. If the representative of your organization would like to attend the AGM, but cannot afford the costs, please send your free format application to the board and we will evaluate your request. Given our current budget, we can allocate a total of 1 000 euros for bursaries (5 bursaries of 200 euros each). If you would like to apply for a bursary, proof of economic adversity would be appreciated. Please note that the bursaries can only be applied by the active members of ECHDO. The board will finalize decisions on the bursary applications by the end of January 2020.

Call of possible board members

There are currently two open seats on the ECHDO board. Please contact us if you are interested to join the board. Please note that at the time being, ECHDO does not have the possibility to pay travelling costs or other expenses, so the representatives’ own organisation or individuals need to fund travelling and lodging expenses to attend meetings.

Membership fee

Enclosed in this newsletter, you can find the invoice and payment instructions for the ECHDO membership fee for the year 2019. We kindly ask you to take care of it by the end of December, if possible. If your organization is unable to pay the membership fee, please contact the Board (board(at) We do not wish to exclude a group from membership because they do not have sufficient funds. Please note, that by paying the membership fee in time, you will keep your status as an active member.

Questionnaire – lack of nursing staff

Last year our German member-organization BVHK contacted the board and asked ECHDO’s help to distribute a very important questionnaire to our members concerning the lack of nursing staff, which many of the member countries are facing. Since we received so few answers, we would like to renew the questionnaire in order to have a better view on the situation. We kindly ask you to answer our short questionnaire until the end of February 2020. You can find the questionnaire following the link below:
If you have any questions, please don’t hesitate to contact us: board(at) – we are more than happy to hear from you and look forward to seeing you in Milan!
Happy Holidays and a Happy New Year to all!
ECHDO board