Joanneke van der Nagel, MD/PhD.
Co-founder and scientific lead
Joanneke is an epidemiologist and a psychiatrist. She works at the University of Twente, the Netherlands, as a senior researcher in the field of technological innovations in healthcare. Joanneke is recovering from Long Covid.
Claudia Werner, PhD.
Project manager content, communication and support
Claudia has a background as a social scientist and assistant professor in Child and Family Studies at Leiden University. After her academic career, she started working as a project manager. She was involved as project manager and main editor of Pleegzorg.nl, an online platform for foster carers and professionals, bringing together accesible evidence-based information, e-learning and the foster care community. She is based in the Netherlands.
Edo Plantinga
Co-founder
Edo works as a freelance IT project manager. He was the community manager for the national open source Corona app (Coronamelder), overseeing a community of thousands of volunteer contributors. He has expertise in user experience design, he is a former startup founder and he holds a master’s degree in Artificial Intelligence. Edo was strategic and operational director for the Toolkit until January 2025. Edo lives in the Netherlands. He is recovering from Long Covid.
Ria Wolkorte, PhD.
Scientific supervisor
Ria is assistant professor Citizen Science for Health at the Department of Health Technology and Services Research at the University of Twente, the Netherlands. Her research focuses on fatigue and self-management of people with chronic conditions. In her research, she applies a citizen science approach so that the knowledge and expertise of researchers, patients, and other stakeholders are utilized throughout the research process; from project idea to dissemination and implementation. Ria oversees the scientific content creation of the Toolkit.
Janine van Til, PhD.
Scientific supervisor
Janine van Til is an associate professor of Health Preference Research at the Department of Health Technology and Services Research at the University of Twente, the Netherlands. Her research focuses on increasing patient involvement in decision making in health on the clinical and policy level. In her research, she focuses on the development and evaluation of patient decision aids, the use of value clarification methods to understand patient preferences for their own health, and the use of health preference instruments to improve our understanding of the patient perspective in policy decision making in health.
Lieke Heesink, PhD.
Scientific supervisor
Lieke is an assistant professor at the department of Health Technology and Services Research at the University of Twente, the Netherlands. Her work focuses on transformation of health care with the use of technology. In her research, she uses both a quantitative and qualitative approach. She has experience with the involvement of patients and other stakeholders in research.
Tsehaynesh Spit
Student researcher
After graduating as an Applied Psychologist, she pursued a bachelor’s degree in Health Sciences. As an Applied Psychologist, she specialized in Behaviour and Technology, highlighting the interaction between humans and technology and exploring ways to optimize this interaction. Within Health Sciences, her focus lies on implementing changes within healthcare to improve its quality. Her goal is to contribute to making healthcare more accessible worldwide. Tsehaynesh is currently studying at the University of Twente, The Netherlands.
For the Toolkit, Joszef focuses on analyzing patient data and structuring and presenting results. József is a dedicated software developer and Computer Science student at the University of Twente. With a focus on creating impactful software, he has contributed to a variety of projects ranging from IoT smart home systems to digitalizing educational processes. He actively contributes to the open-source community and enjoys working on innovative solutions that enhance everyday life. His life was considerably impacted by fibromyalgia which drives his commitment to the Long Covid Toolkit project. He is based in the Netherlands, Hungary and, temporarily, Japan.
Volunteer team
Maryangela Ohanu
After completing her medical training in Ukraine, Maryangela Ohanu pursued a Master's degree from Tilburg University, the Netherlands. As a health researcher, she specializes in translating research into improved public health interventions and policy recommendations. Within the context of public health, her focus lies on understanding the unique challenges faced by people with Long Covid and how evidence based research can improve their care. Her goal is to leverage her experience to contribute to making healthcare more effective, accessible, and equitable worldwide. Maryangela lives in the Netherlands.
How the Long Covid Toolkit started
The idea for the Long Covid Toolkit started towards the end of 2022, when project manager Edo Plantinga and psychiatrist-epidemiologist Joanneke van der Nagel, both from The Netherlands, were introduced. By then, Edo had been suffering from Long Covid for nearly a year. After reading numerous books on Long Covid and ME/CFS, he discovered the existence of some promising interventions. However, he realized a significant problem: there was no centralized overview of these treatments. This prompted him to come up with the idea of the Toolkit, which he shared on the now-defunct Body Politic online patient forum. Around the same time Joanneke, as both a doctor and a Long Covid patient, initiated an online patient group for healthcare providers suffering from Long Covid, which helped refine the idea of the Toolkit. Together, they saw the urgent need for a structured and accessible source of treatments, which became the foundation for creating the Long Covid Toolkit.
In 2023, the Long Covid Toolkit began to take shape, although progress was slowed by the illnesses of founders Edo and Joanneke. Despite these challenges, they managed to secure Swis as a sponsor to build the first working prototype and were supported by a growing team of volunteers. They also applied for a subsidy from ZonMw, a Dutch government agency. Due to health reasons, the project's activities were paused for about five months, until the subsidy was granted in March 2024. This funding marked the restart of their efforts and the founding of the Long Covid Toolkit Foundation.
Team
See who’s working on the Toolkit and how it all started.