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VSOP is the Dutch national umbrella organisation for rare, genetic and congenital disorders. It represents about 70 disease-specific patient and parent organisations in the Netherlands. One of its focuses concerns therapy development for rare disorders and the involvement of patients and their organisations therein.

VSOP is a founding member of EGAN, the European Patients’ Network for Medical Research and Health, an alliance of patient organizations for genetic and other serious diseases, with a focus on therapy development, research(policy), prevention and education (www.egan.eu). Acting on behalf of EGAN, VSOP addresses this issue also in the European and international field through projects like PatientPartner, Gencodys and EUPATI. VSOP also is recognized by Eurordis as the Dutch national alliance for rare diseases. VSOP has 23 skilled employees with a (biomedical) academic background who are actively involved in health care policy, quality of care and patient involvement in research. 

In this project, VSOP will access and utilize all EGAN resources to carry out their tasks in this project e.g. the EGAN network and its policy initiatives amongst which representation in the COMP at EMA, hosting www.biomedinvo4all.com, an educational and empowering website on patient involvement in (clinical) research and research policy and partnering in many EU projects promoting engagement of patients and patient organisations in innovative research.

Main tasks

VSOP is involved in WP4 and WP6. VSOP will coordinate all activities that need the view of, and interaction with, patients and patient organizations by utilizing the EGAN network. By installing a patient think tank, VSOP will ensure that the patients’ perspective on new statistical methods is obtained and included already during the project. The patient think tank will consist of about 10 to 15 patient advocates across several rare conditions. They will be consulted regularly during the annual workshops as well as on an ad hoc basis when issues arise during the project that require the patient’s perspective.

Furthermore, in WP4, VSOP, by accessing the EGAN network, will provide the major network through which patient organisations can be approached, will facilitate focus groups and meetings and provide the patient perspective expertise to design adequate surveys.

In WP6, VSOP will use the EGAN network to disseminate the results of the project. This network includes both EGAN and VSOP’s membership, Eurordis, Orphanet, GRIP, GenCodys, EUPATI, ECRIN-IA, and the PatientPartner. Network (www.patientpartner-europe.eu). In addition, VSOP will contribute to the Advisory Board by ensuring participation of least 5 patient representatives.

Key personnel

The VSOP team members involved in the ASTERIX project all have a background in biomedical and clinical research, as well as working with patient groups and investigating their needs and perspectives. In the PatientPartner project, guides for patient involvement in clinical trials were developed, for patients as well as for sponsors / investigators. In other EU projects such as GENCODYS, GRiP and ECRIN-IA, VSOP and EGAN have been or are still responsible for facilitating patient involvement and interaction of research communities with patient organisations (see e.g., www.eurordis.org/content/eurordis-summer-school-patient-advocates). In EUPATI (IMI), EGAN (through his founding partners VSOP and GA-UK) works together with academia and industry on the development of educational tools on therapeutic innovation for patient representatives (www.patientsacademy.eu). In collaboration with academic and industrial partners, EGAN develops educational brochures for patients and patient organisations on biomedical research themes, such as clinical trials, patient registries, biobanks and personalised healthcare (see www.biomedinvo4all.com).


Cor Oosterwijk, PhD
Researcher, WP4 and WP6

Nicky Dekker, MD PhD
Researcher, WP4 and WP6