Stichting (On)beperkt Vooruit!
Budget
€9,510
EP Access
0
accredited persons
Staff
4
0.55 FTE
EU Grants
None
Mission & Goals
Stichting (On)beperkt Vooruit! bridges the gap between healthcare, policy, research and lived experience. The foundation supports and represents childeren and (young) people living with multimorbidity (MLTC) and/or rare diseases facing complex health or social challenges. It operates nationally, at EU level and globally through networks such as IRDiRC and GNNRD and collaboration with European initiatives like EURORDIS. Its mission is to improve quality of life by ensuring that healthcare, policy and research reflect real-life needs. SOV contributes to ethical, participatory research and responsible innovation in patient-centred care. Its representatives are trained through EUCAPA and EUPATI and act as HTA Ambassadors, integrating patient expertise into evaluation and decision-making. SOV also provides personal nursing care and equine-assisted coaching, promoting resilience, body awareness and inclusion.
EU Legislative Interests
Regulation (EU) 2021/2282 on Health Technology Assessment. Horizon Europe Framework Programme – Cluster 1 “Health” (2021–2027). EU4Health Programme (2021–2027). European Disability Strategy 2021–2030. European Care Strategy (2022). Council Recommendation on a European approach to rare diseases (in preparation).
Communication Activities
SOV engages with the European Commission mainly through participation in policy dialogues, research projects and stakeholder workshops under Horizon Europe and EU4Health. The foundation contributes patient perspectives on multimorbidity, rare diseases and inclusive care to consultations and expert meetings. It also interacts with European initiatives such as EURORDIS, EUPATI and ERN-related networks, and exchanges knowledge globally through IRDiRC and GNNRD. These activities aim to align healthcare and research with lived experience. SOV conducts no lobbying or commercial advocacy.
Interests Represented
Does not represent commercial interests
Member Of
Stichting (On)beperkt Vooruit! is involved in several national, European and global networks including the International Rare Diseases Research Consortium (IRDiRC), the Global Network for Rare Diseases (GNNRD), EURORDIS, Patiëntenfederatie Nederland and VSOP. The foundation and its representatives are EUPATI and EUCAPA trained patient experts and HTA Ambassadors. It collaborates with the University Medical Center Groningen (UMCG) on research into multimorbidity and care coordination, and has provided scientific and patient-centred advice to the Dutch Medicines Evaluation Board (CBG). Previous collaborations included the Endo-ERN and ERICA networks.
Organisation Members
Stichting (On)beperkt Vooruit! does not have formal members. It operates as a non-profit foundation with an active board, volunteers and partner organisations. More information about its activities and collaborations is available at: https://onbeperktvooruit.nl/information/
Commissioner Meetings
No recorded meetings with EU commissioners.