On Saturday, March 23, 2024, we will host another information afternoon on behalf of the foundation. This is the first afternoon of information this year. With the information afternoons, we tell you more about PLN, current treatment methods and, for example, heredity. The content of the program is carefully curated by our coordinators.
Each information afternoon is different, with different speakers from the field telling you more about PLN. These may be our own colleagues, such as Chairman Pieter Glijnis or Scientific Officer Luuk Kerckhaert. We also invite other experts such as cardiologists or researchers to speak.
PROGRAM
Put at least 1 p.m. to 3:30 p.m. (with run-out) in your calendar. We are organizing the afternoon in the province of Groningen, at the Van der Valk hotel Zuidbroek. The address of this location is Burgemeester Omtaweg 4.
10:30 – 12:30 a.m.: Blood draw, you can still sign up for this
12:30 p.m. – 1 p.m.: Walk-in information session
13:00 – 13:15: Opening and welcome by Pieter Glijnis, chairman PLN Foundation
1:15 p.m. – 1:35 p.m.: What does the PLN mutation do to the heart and what are current treatment options? Dr. Niels Grote Bevenborg, cardiologist UMC Groningen
13:35 – 13:55: Diagnosis PLN: about the mental impact, by Marije Schoonbeek, GZ psychologist Beatrixoord; center for rehabilitation UMCG
1:55 p.m. – 2:15 p.m.: Break
2:15 pm – 2:35 pm: L1C Gene Therapy: on the upcoming clinical trial with PLN patients, by Scientific Officer Luuk Kerckhaert
2:35 p.m. – 2:55 p.m.: PLN – Je zal ‘t maar hebben, call for the Youth Day on April 20 in Hoogkerk by Joost Westerhof. Co-organizer and carrier
From 2:55 p.m.: Closing and opportunity for discussion
!!! CAUTION !!!! Due to road works on the ring road, there are several road closures this weekend that will cause delays. So before you leave, always check the route on A to Better!
BLOOD DEATH
We take our mobile blood can on location. This allows us to collect blood on site from carriers or family members, for example. This blood will be used for research on PLN. We obviously handle this with extreme care. It is possible to donate blood as a carrier and as a family member for this information afternoon. Blood collection begins from 10:30 a.m. to 12:30 p.m. Would you like to participate in this? Then it is important that you complete the blood draw form. Click here to fill out the form.
LIVE-STREAM
A live stream will be available during this information afternoon. You can watch the live stream online via Zoom, later the recording will also be available on YouTube to watch back. In your application to us, you can of course indicate that you want to be present at this via Zoom.
SIGN UP FOR THE INFORMATION AFTERNOON
You can register for the information afternoon at info@plnheart.org. Then let us know if you will join the physical meeting and/or blood draw. We will get back to you as soon as possible with a response to confirm your application. When registering for the blood draw, don’t forget to include your completed form.