The Netherlands has a long tradition of professional patient representation and a well-organized network of patient organizations. Patient involvement in the development of therapies is important to ensure that therapies meet real-world needs. For patients, there are several organizations that can be the place to ask questions, understand the research process and explore opportunities to contribute to the development of new therapies.
- INVOLV is an expertise centre in the Netherlands, they provide organisational advice and training in patient involvement. They do this for and with patient and client organisations, healthcare providers, researchers and other parties in health care and welfare .
Patient organizations (NL)
- Patientenfederatie Nederland: The Netherlands Patients Federation represents more than 200 patient organisations.
- VSOP is the national patient alliance for rare and genetic diseases in The Netherlands.
- VKS: the patient organisation for everyone affected by a metabolic disease in The Netherlands
Podcast
- INVOLV podcast (in Dutch). For example, episode 4 is about the collaboration between a patient representative for a rare condition (SCA1) and a lab researcher.