Dear members,
First of all, thanks to all of you who made it to the AGM in Leicester! Both the AEPC psycho-social conference and the AGM were really good and gave us a lot of new information. We are hoping that more members will be able to join us next time! Please save the date for the next meeting, which will be in Iceland, Reykjavik on the 3rd to the 4th of May 2019. We have already started preparations and we will let you know more details later in autumn. 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. The minutes and the report of the AGM are attached.
About the administration
As all of you know, we have faced some administrative issues during the past few years and to solve these issues, we have become a member of the European Patient Forum and we have also been approved to receive help from Trustlaw for legal issues. In fact, through Trustlaw, we applied to get free legal representation in order to get an increased stability and we are currently being followed, for free, by the prestigious legal studio, White & Case in Belgium. The partners of the studio who are following us, looked into the details and have given us very important instructions and information in order to achieve better administration for ECHDO.
As you can read from the minutes, White & Case brought one very important thing to our attention, which needs actions from all of our members. Since day one of ECHDO being formally established, we haven’t followed our statutes and Belgium law, and therefore all the previous annual general meeting decisions need to be ratified. In our statutes Article 14 requires formal convocation letters to be sent to the attendees of the general meeting 4 weeks beforehand. These convocation letters must specify the agenda of the AGM with all the items that will be discussed. This has not been followed by the previous boards or the present one. We will start this ratification process during the autumn and we will keep you updated with every step.
When going through the administrative issues, we have also received help from White & Case on how to proceed with changing statutes and banking issues. We are happy to inform you that we have found an affordable solution to solve the banking issue and getting an address in Belgium which doesn’t need involvement of a Belgian citizen. Since the beginning of ECHDO’s history, our official address has been one of the previous board member’s home address and although we are thankful for this first solution, all the board members agreed that a long term, more stable solution needed to be found. The thing is that changing ECHDO’s official address requires change of the statutes and the change of the statutes needs to get approval at an AGM. Meanwhile we can set the working address elsewhere and proceed with the banking issues and start working with the new statutes. We have already gotten the notification that the Belgian legislator is in the process of adopting a new law on NGO’s, which can also affect our process of adopting our statutes.
Future plans
Questionnaire - Prior to this year’s AGM we sent a questionnaire to our members about your expectations towards ECHDO and its main tasks – the summary of the questionnaire is attached (report2017_summary). From that we would like to work on a few of the topics that you mentioned: A few of you were hoping for more meetings and conferences for members. Since we don’t have the financial means to arrange more conferences at the time being on our own, we would like to point out the possibility of joining conferences arranged by the European Patient Forum and Eurordis or others in the future.
European Youth Camps - Few of our members were hoping that ECHDO could arrange camps for our adolescents with CHD in the future. In the ECHDO’s history German, Spanish, Norwegian and Swedish organizations have had a pilot camp. We have decided to try to arrange a European Youth camp in the year 2019. The Finnish Association for Heart Children and Adults is willing to host the camp and they have applied for funding from the Finnish Funding Centre for Social Welfare and Health Organisations (STEA). If the funding is approved, the vast majority of the costs could be covered from there and participants would only pay a small participation fee together with travelling costs. The preliminary plan is that the camp would be held late July - early August in 2019 and there would be places for around 10 countries (5+1 from each). We will send more information about the camp during the autumn to all of you. If you are interested in joining the camp, please send a letter of interest to the board by the end of August. As the places are limited, availability is based on a first come first served basis, so we suggest you reserve as soon as possible if you are interested.
Communication – Another topic that our members were hoping that we (as a board) will improve on is our communication with members. Therefore we have decided to send a newsletter 3-4 times a year and of course more often if needed. This is the first version of the newsletter and we are happy to receive any feedback and/or improvement ideas. We also need a little bit of your assistance when it comes to updating our web-page – we kindly ask you to look through the current information on your association from the http://www.echdo.eu/echdo-members and if there is something which should be updated, please send a mail with the topic UPDATE REQUEST to the address info(at)echdo.eu and we will take care of it.
ECHDO collaboration with ECHG the European Congenital Heart Group – The EuroHearts Conference was organized by the Finnish association for Heart Children and Adults this year, from the 30th of July to the 4th of August and Katja, Edward and Giovanna were present also representing ECHDO. During the conference, we gave a brief presentation of ECHDO and asked the ECHG working group and members to see on how we can strengthen our collaboration. It is with great pleasure for us to tell you, that ECHG is willing to explore the possibility of a merger, and the ECHG working group and the ECHDO board will be working closely to see how this merger is going to occur. We will keep you updated.
Other topics
ECHDO has been presented at the 28th International ACHD Symposium in Toronto, where Edward was invited as faculty and to give 3 presentations. 1 of the presentations was the presentation of the recently published guidelines: Multidisciplinary family-centred psychosocial care for patients with CHD: consensus recommendations from the AEPC Psychosocial Working Group. An interesting free access article about how peer to peer support and clinical psychology can contribute to congenital heart disease was also recently published and can be found here:
https://www.frontiersin.org/articles/10.3389/fpsyg.2018.00731/full
Leaflet – We have made a new brochure for ECHDO which can be printed out from the following link: http://www.echdo.eu/sites/default/files/trifold_leaflet_echdo_v2_final.pdf
If you have any questions, please don’t hesitate to contact us: board(at)echdo.eu – we are more than happy to hear from you!
ECHDO board