Newsletter 02/2018

Dear members,                                                                                                                                                                                                 

The holiday season is approaching and soon it is time enjoy the Christmas spirit and company of the loved ones. But before that there are some exciting topics we want to share with you!  

Membership fee

Enclosed of this newsletter, you can find the invoice and payment instructions for the ECHDO membership fee for the year 2018. We kindly ask you to take care of it until 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. 

Registration open to AGM

As we told you in the previous newsletter, the next AGM will be held in Iceland, Reykjavik on the 3rd to the 4th of May 2019 which will be already our 10th Anniversary AGM! The venue is decided and now we are working with the program and other details together with Icelandic Association Neistinn. Since it is our 10th anniversary, we would like to give you a possibility to present and share your “showcase” projects as a learning point to all of us. So if you have an interesting project which you would like to present to all of us, please don’t hesitate to contact the board as soon as possible! You can find the registration information together with the preliminary program attached to this newsletter. Information together with the registration form can be found from our website: The registration ends by the end of March. If needed, you can apply for a bursary to cover some of the travelling cost with the free format application from a board.

The next AEPC psycho-social working group’s meeting will be in March-April 2020 in Milan, Italy and our AGM will be arranged in conjunction with the AEPC conference.

About the domiciliation

As all of you know, we have faced some administrative issues during the past few years. With the help of White & Case, we are finally able to take big step to solve some of these topics when we are opening the working address for ECHDO on the beginning of the year. After that we are also able to proceed with the banking issues.

Changing statutes

One of the ongoing processes which you must be already aware, is the change of ECHDO statutes. We have started to prepare the change together with the ECHG (European Congenital Heart Group, un-official group for the adults with CHD) in order to make changes so that the most of the associations representing also adults with CHD could join ECHDO in future. We are also planning to adjust the statutes so that there would be possibility to have associated members in the ECHDO in future so we would have members who could join some of the actions without right to vote and without obligation to pay the membership fee. The plan is to get the draft of the new statutes ready by the end of March. When the draft is ready, it will be sent out to all of the members. If everything goes as planned, the approval of the new statutes will be done on the next AGM in Iceland.   

As informed in the previous newsletter and instructed by the White & Case, we also need to start the ratification process of the previous AGMs. That will need actions from all of our members and we will let you know soon about the process so that everything is thought over and ready before the next AGM.

European Youth Camp

On the previous newsletter we informed about the plans of arranging camps for our adolescents with CHD in the future. We are happy to inform you, that the Finnish Association for Heart Children and Adults got funding for the camp from the Finnish Funding Centre for Social Welfare and Health Organisations (STEA) to arrange a camp on the summer of 2019. Attached you can find the official invitation to the EYC camp which will be held on 2nd to 9th of August 2019  close to Finnish Capital Helsinki. You can find also the preliminary program and other general information.  The EYC camp is aimed for the youngsters from around 14 to 18 years. The participation fee is 300 euros per person which covers accommodation, food and full program of the camp. Also the travelling costs to Helsinki are paid either by the participants or the sending organization.

On first place, all the countries who are interested of participating to EYC should contact Finnish Association for Heart Children and Adults ASAP, latest by the end of January 2019 (letter of interest) together with the information how many participants you are planning to send.  All together there are places from 7 to 10 countries – depending how many participants each one sends. Availability will be from 2 to 6 youngsters and from 1 to 2 leaders from each association/country. Maximum capacity for the whole camp will be 60.

Please note, that the places are limited; availability is based on a first come first served basis. Currently we are expecting participants from Finland, Iceland, Ireland, Croatia and UK. There are still few places left, so if you interested, you should act fast! This unique opportunity may not occur again on the near future… We will send more general info for the associations that are joining the camp on January 2019.
For more information, we kindly ask you to contact the Finnish Association for Heart Children and Adults, Katja Laine (katja.laine(at) 

Questionnaire – lack of nursing staff

Our German member-organization BVHK has contacted the board and asked ECHDO’s help to distribute very important questionnaire to our members concerning the lack of the nursing staff which many of the member countries are facing. In order to have a better view about the situation we kindly ask you to answer the questionnaire until the end of January. 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 seeing you in Iceland!
Merry Christmas and Happy New Year to all! 
ECHDO board