On Saturday, October 24, 2020 we are organizing our annual global members conference, this year in the Netherlands.
Due to the COVID-19 / Corona virus, we, unfortunately, have to organize this as an “online” conference this year. We conducted a global survey with the aim of understanding the needs of our members.
A previous survey showed that our members from other countries, such as India and the USA, would like to attend our members conference via a video conference. We can now also respond to this wish.
Just like our other member conferences, only members who have paid their annual membership fees will be allowed access to this conference.
Unfortunately, we cannot offer personal medical advice during our “online” conference this year.
This is because our doctors cannot offer good and reliable personal medical advice at the required quality through a simple web camera.
Normally it is possible to meet other patients/families on Friday and Saturday. This is more difficult in an “online” environment and we have now arranged this by using separate rooms (“breakout rooms”) where you can meet others “virtually”.
We have set up the following breakout rooms:
We ask the participants of the first 3 breakout rooms to arrange among themselves who may take the lead. We would like to take up any questions/comments/suggestions from these sessions in our board.
This year the conference is completely “online” and is, of course, available at your location!
We use the paid “online” video conference environment from ZOOM Pro. This offers the following options:
To participate in our worldwide member conference you need the following things:
Especially in our environment where we are sharing medical information, privacy monitoring is crucial! As an organization, we adhere to the very strict European Privacy legislation (GDPR).
During the registration for our member conference you can already indicate whether or not you object to the taking of photos, etc. during our conference. This is a standard procedure with us. People who do not want to appear on photo/video material will get a red cord during our ‘real’ conference in the Netherlands.
At the “online” conference you have the option to turn off your video camera and not display your name.
The recorded sessions are stored on our own secure computers and not on ZOOM servers in the USA. American security is not on the same level as European privacy legislation (more information).
For many people video conferences are quite new and it is therefore useful to make agreements about how we interact during such a conference.
We want to make the threshold as low as possible to allow participation in our conference and that is why we will organize a number of trial sessions. We will announce these and take time zones into account as much as possible.
During a trial session, you can try out how video conferences work with ZOOM in practice. At the same time, this will prevent valuable time from being lost during the conference itself when problems arise that are caused by people not (yet) being familiar with the ZOOM environment.
The questions and answers can be sent in advance via our contact form so that our medical specialists can prepare optimally and we can then answer as many questions as possible. The questions can be asked in English or Dutch.
Of course, you can also ask questions you have collected during the conference.
Please use the following text as the subject in the contact form: Q&A MC 2020.
We will have members particiapting frm all over the world in all kinds of time zones. We have drawn up the agenda below in such a way that as many members as possible can participate immediately.
We will record our sessions on video as usual and these will be available later in the member’s section of our website.
The times below are based on Central European Time (Amsterdam / Paris / Madrid).
Time | Speaker(s) | Subject & location |
---|---|---|
12:45 – 13:00 | Reception | |
13:00 – 13:30 | Lex van der Heijden | Welcome, organisation report |
13:30 – 14:00 | Prof. Dr. Miikka Vikkula (Belgium) | How to find the cause of CMTC |
14:00 – 14:15 | – | Break |
14:15 – 14:45 | Dr. Margaret Lee (USA) | Comfortable In Our Skin: Special Pathways to a Common Goal |
14:45 – 15:15 | German | Breakout room 1 |
14:45 – 15:15 | English | Breakout room 2 |
14:45 – 15:15 | Dutch | Breakout room 3 |
15:15 – 15:30 | – | Break |
15:30 – 16:00 | Lex van der Heijden | Feedback parallel sessions & discussion |
16:00 – 16:30 | Prof. Dr. Suzanne Pasmans (NL) | Question and answers |
16:30 – 16:45 | Lex van der Heijden | Summary & closure |