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The Netherlands is to get a national centre for long covid research, set up and paid for not by the government, but by patients themselves. The patient foundation Stichting Long COVID has announced a national research and innovation programme for long covid and other post-acute infection syndromes, stepping in as government funding for the field dries up.
What is being set up
The new centre is intended to bundle together the knowledge built up in the Netherlands over the past few years, and to make sure it is not lost. Its aim is to translate scientific results more quickly into targeted treatments, for adults and for children. It is a research and innovation hub, distinct from the hospital-based expertise centres that treat patients, and it is meant to keep researchers from different university medical centres and knowledge institutes working together.
The foundation is funding the initiative itself. This year it awarded 500,000 euros to seven researchers at the Amsterdam UMC, the Vrije Universiteit Amsterdam, UMC Utrecht and Erasmus MC. There is, at present, no proven effective treatment for long covid, which is precisely why continued research matters so much to those living with it.
Why now when the money is scarce
Among many other issues the Netherlands is struggling with at the moment, the timing may seem strange. The reason a patient foundation is stepping in is that public money for long covid research has been spent. The government’s dedicated post-covid research programme, run by the health-research body ZonMw, was funded through to 2026, and no new government funding is currently available. According to ZonMw, if fresh money does come, researchers could at the earliest get back to work only around the end of 2029, leaving a gap of several years in which built-up expertise and research capacity risk being lost.
That prospect has alarmed patients and researchers alike, which is what the new centre is designed to prevent.
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A year of mounting pressure
To understand the significance, it helps to look at how long covid has been treated in the Netherlands over the past couple of years. Long covid, also called post-covid, refers to symptoms that persist for more than three months after a coronavirus infection, and can include severe fatigue, breathlessness, memory and concentration problems, muscle pain and heart palpitations. Their severity varies enormously, and much about the condition, including how best to treat it, remains unknown.
Surveys by the RIVM public health institute estimate that around 400,000 adults and children in the Netherlands experience long-term symptoms after covid, of whom roughly 100,000 have serious limitations. Many of the most severely affected can no longer work or attend school, often face financial hardship, and lose much of their social life. The Netherlands still has no formal registration of long covid patients, which is one reason the exact numbers remain uncertain.
Over the past year, the issue has pushed steadily up the agenda. Temporary post-covid expertise centres were set up at university hospitals from late 2024 to provide specialist care and gather knowledge, with referral through a patient’s GP. In May 2026, the Health Council of the Netherlands (Gezondheidsraad) advised that long covid be taken seriously as a current health problem rather than a closed chapter of the pandemic, explicitly placing it alongside other post-infectious conditions such as ME/CFS, Q-fever fatigue syndrome, Lyme and post-sepsis syndrome, which patients say have been overlooked for decades. The council warned that the large numbers of patients could not simply be absorbed into regular care, and that the existing expertise centres should be carefully evaluated before any decision on their future.
At the same time, patients have grown increasingly frustrated and, in some cases, desperate. Patient organisations have warned repeatedly that the need is enormous and that it makes no sense to “turn off the tap halfway”. Support structures are also being wound down: the organisation C-support, which helps individual patients navigate care and bureaucracy, is due to end its individual support at the end of 2026. Campaigners have held protests, including a national demonstration for people with post-infectious syndromes, to press for recognition, care and structural funding. The new patient-funded centre is, in effect, the movement’s response to a fear that, as public attention fades, the people left behind by covid will quietly disappear from view.
What it means for patients
For the hundreds of thousands of people living with long covid, the centre offers a measure of hope that research will continue and that the knowledge gathered so far will not be wasted, even if it does not change their day-to-day care immediately. There is still no cure, and the road to effective treatments is likely to be long.
Anyone struggling with long-term symptoms after a covid infection can speak to their GP about a referral to a post-covid expertise centre, and patient organisations such as PostCovidNL and Stichting Long COVID offer information and support for those affected and their families.