![]() Then we envisage a top-down, global research set-up, which brings together different disciplines from different medical fields.” Since there is so little knowledge, we need to stimulate a lot of good ideas that can generate pilot projects that could give direction to bigger research programmes. We also go directly to scientists to see how we can develop concrete research plans or pilot projects to fund. CollaborationĪnother part of their work is stimulating new research, as Ellen explains. They are now expanding the board to include non-medical participants. They currently have a patient sounding board, composed of doctors who themselves have long COVID, which means that any funding decisions can be fairly assessed by people with an understanding of both the condition and the science behind it. “Scientists can approach us with proposals for research projects that require between US$ 15 000 and US$ 100 000 of funding, and within 2 weeks we can let them know whether or not it’s in our scope, or whether we need to know more before funding it.” The long COVID foundation has created a team of 8 dedicated researchers who scan and compile the latest research into the condition, so that funding can be directed towards the research they’ve assessed as having the greatest potential. Therefore, the long COVID foundation has 4 clear values that shape its mission: speed, solution orientation, collaboration, and focus. With studies showing that 10–20% of people who develop COVID-19 go on to experience a variety of mid- and long-term effects after they recover from their initial illness, the foundation is driven by patients’ need for urgent answers. Together, they are raising money from private sources, both through crowdfunding and through targeted fundraising from high-net-worth individuals, family-run businesses and non-profit organizations. And to do that, we need money.” A clear focusīoth Ellen and Annelies come with experience very relevant to developing the foundation: Ellen has expertise in fundraising for start-up businesses and is used to managing complex multiparty innovation projects, while Annelies is a doctor with a large network of contacts in the medical and scientific world and an active member of the Dutch community of long COVID patients. ![]() “It works because we are all aiming for the same goals, and we are all sending the same message that we need to understand the causes of long COVID so that we can develop treatments. Annelies describes how this complements the work of other long COVID organizations in the Netherlands that concentrate more on supporting patients with information, care and rehabilitation, organizing peer contacts or political lobbying, for instance. The long COVID foundation seeks to fill this gap by dedicating itself exclusively to fundraising for biomedical research, or research that examines the biological and physical reasons for the condition, including reasons for autoimmunity (where the body’s immune system attacks its own tissues). “There have been very few studies looking at the biomedical part of this disease.” “So far, much of the focus has been on the epidemiology, logging of symptoms, sending out of questionnaires, and the organization of health care,” says her fellow co-founder, Annelies Bos, who has herself been living with long COVID for the past 3 years. ![]() “What I don’t understand is why there isn’t more of a sense of urgency about funding research into long COVID, when it is costing society so much,” says Ellen Bark, co-founder of Stichting Long COVID, the Dutch long COVID foundation. ![]()
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