On Saturday 12 April 2025, the first national Long COVID Patient Day took place in the Jaarbeurs Utrecht. A day that made a deep impression on the more than 1300 participants - 625 visitors physically present and more than 700 online via a livestream. The meeting, organised by Long COVID Nederland and Post-COVID NL, offered space for people with Long COVID, their loved ones, healthcare professionals and organisations to meet each other, share experiences and gain knowledge.
Former minister Pia Dijkstra chaired the day, and Member of Parliament Julian Bushoff (GroenLinks-PvdA) led the panel discussion on current topics surrounding Long COVID. Their presence underlined the growing political awareness surrounding this long-term condition.
The program consisted of three substantive sessions, provided by scientists, healthcare professionals and experts by experience. Themes such as the impact of Long COVID on daily life, work, education and the Social Support Act (WMO) were discussed extensively. In addition, there was room for books, visual talk, and stands from various organizations.
Lous: “It was a day where the patient was really central in attention, information and involvement! So many nice people carefully shaped this moving day!”
C-support actively contributed to this day, both in terms of content and in the meetings with visitors:
- Lous Rijssenbeek-Nouwens and Sytske Peterson provided inspiring contributions on stage, discussing the broad impact of post-COVID and a piece about WMO.
- During the panel discussion, Sytske Peterson answered various questions submitted in advance by the audience – with a great deal of attention to practice, policy and personal situations.
- Ingrid Gopal, Nadja van Rems and Bettie de Vries manned the information stand, where visitors could get information and ask questions. There was also information material available about complaints after vaccination that was frequently taken.
Sytske: “We often speak to people on the phone or digitally, but being in one room with so many people made a deep impression. Despite the fatigue, there was so much warmth, connection and warmth.”
For many visitors, the stand was an important place of recognition and was very popular. People regularly stood in line to ask a question or receive information. Appreciation was expressed for the previously received advice and customized support from aftercare advisors, medical advisors, labor experts and lawyers. There were also many informal caregivers because their partner/child/parent could not come themselves. This also resulted in questions. A small number of visitors who were not yet familiar with C-support were shown how to register.
Bettie: “The event was completely sold out. And we noticed this. Many people came to see us, especially people who are already affiliated with C-support, some still want to register. People are so happy with the help of C-support, we received many compliments that concern us all. For many people we are a listening ear and we understand the patients and they benefit a lot from the advice we give them. Having this support is important to them. It was on the one hand beautiful but also very tough that we really got to see people now and not just speak to them on the phone. They suddenly get a face which was also quite emotional."
A program that touched and connected
The day offered a rich and varied program, with attention to themes that directly relate to the world of people with Long COVID. The sessions were provided by experts, healthcare professionals and experienced experts.
The main program components consisted of:
- Session 1 – From symptom to society
With Prof. dr. Michele van Vugt and Dr. Lous Rijssenbeek-Nouwens - Session 2 – From classroom to workplace
With Nicole van Klaveren and Sandra Bleyenberg-de Korte - Session 3 – Moving forward together: the WMO, relatives and the future of Long COVID
With Danny van Stam and Sytske Peterson - Panel discussion
Led by Julian Bushoff, with contributions from Michele van Vugt, Bastiaan (patient) and Sytske Peterson.
In addition to these sessions, there was also room for book presentations and visual talk. The organization paid a lot of attention to accessibility and stimulus limitation, with rest areas, silence zones and available face masks. The day ended with a feeling of connection and recognition. The power of meeting - of eye contact, conversations and shared experiences - gave many new courage.
A complete review of the program with all speakers will be shared soon by the organization of the Long COVID Patient Day.
Handouts of the presentations
Below you can find the handouts of the presentation by Lous Rijssenbeek-Nouwens about 'from symptom to society' and Sytske Peterson in 'together forward' about the WMO, relatives and the future of Long COVID. The presentation by Lous Rijssenbeek-Nouwens is based on our Multi-year Long COVID study.
