Who we are

Foundation (Un)limited Forward! (Dutch: Stichting (On)beperkt Vooruit!) is an independent non-profit organisation (ANBI status) dedicated to strengthening self-management, care coordination and quality of life for people living with rare diseases — in particular adrenal and lung-related conditions — and/or multiple long-term conditions (MLTC), both individually and in groups. As a patient-led organisation, we place lived experience at the heart of everything we do, combining it with nursing, medical and scientific expertise to improve care and wellbeing.

Our board is composed of a majority of patients, complemented where possible by family members or caregivers of rare disease or MLTC patients, by individuals with affinity with these groups, or by healthcare professionals working with them. This ensures that patient perspectives and interests are leading in all decisions. Scientific and healthcare expertise is included in a complementary role, reinforcing but never replacing the voice of patients.

As a foundation, we do not operate a formal membership structure. Our services and support are open to all patients, family members and caregivers who wish to seek advice or guidance. Our approach is grounded in lived experience: the knowledge and expertise of people living with rare diseases and/or MLTC. Alongside our policy, research and advocacy work, we also provide innovative forms of support such as equine-assisted coaching, helping people to build resilience, strengthen self-management skills and enhance their quality of life.

All board members and volunteers work on a voluntary, unpaid basis. Our income comes from donations, subsidies and partnerships with societal organisations. Any sponsorship is directly linked to activities organised by the foundation. We do not accept funding from pharmaceutical companies, safeguarding our independence at all times.

Collaboration with policymakers, knowledge institutions and societal partners

At Foundation (Un)limited Forward!, we believe in the power of collaboration to create lasting improvements in healthcare and wellbeing.
Our core expertise lies — though not exclusively — in the field of multiple long-term conditions (MLTC) and rare diseases, which often go hand in hand and are associated with complex care needs and fragmented services. These perspectives guide our contributions to policy, research and education across various levels.

We combine lived experience with policy insights and academic knowledge to actively contribute to policy development, research, education and innovation both in the Netherlands and across Europe.

What we offer to large-scale organisations

1. Policy advice and lived experience expertise
in collaboration with organisations such as the Medicines Evaluation Board (CBG), the Dutch Patients Federation (Patiëntenfederatie Nederland) and VSOP (Dutch Organisation for Rare and Genetic Diseases)
We translate the lived experience of people with chronic conditions and disabilities into meaningful input for policies and practical improvements. Our focus lies particularly on individuals with rare diseases and those living with multiple long-term conditions (MLTC). Our contributions include:

• participation in advisory committees and policy forums

• sharing real-world insights for policy development

• identifying barriers in healthcare delivery and access

2. Research and innovation partnership
in collaboration with IRDiRC (International Rare Diseases Research Consortium), ENDO-ERN (European Reference Network for Rare Endocrine Conditions), Orphanet, the Dutch Knowledge Institute of Medical Specialists, University of Groningen, Utrecht University and Erasmus University Rotterdam
Stichting (On)beperkt Vooruit! is an experienced partner in (inter)national research projects. We contribute by:

• providing the patient perspective, particularly in the context of rare diseases and MLTC

• developing and supporting narrative case studies

• engaging in co-design and evaluation of interventions

• disseminating and implementing findings in real-world settings

3. Educational contributions and professional networks
in collaboration with networks such as the Global Nursing Network for Rare Diseases and various academic institutions
We provide expert input for training programmes, lectures and curricula on inclusive healthcare, self-management and patient engagement. This includes partnerships with:

• professional associations, nursing networks and educational institutions

• healthcare organisations focused on complex or rare care needs

4. European patient networks and advocacy
In cooperation with EURORDIS, the European Patients’ Federation (EPF), EUPATI EU/NL and the Dutch Patients Federation (Patiëntenfederatie Nederland)
We are actively involved in national and European platforms that amplify the voice of patients in research, policy and innovation.
As a Health Technology Assessment (HTA) ambassador within EUPATI EU, we contribute to strengthening the role of patients in the evaluation and early dialogue around new medical technologies and treatments.
Our overall contribution is grounded in lived experience, especially regarding inclusion, access to care, treatment adherence and therapy development.

5. Bridging practice and policy
Our strong presence in practice, combined with a broad network in healthcare and patient advocacy, allows us to connect everyday experiences with policymaking and research agendas. We ensure that the voices and needs of people particularly those living with rare and multiple chronic conditions are meaningfully included at every level.

Contact

For questions or collaboration requests, you can reach us via:

✉️ Email: stichtingonbeperktvooruit@gmail.com

🌐 Website: www.onbeperktvooruit.nl 

For matters related to international collaboration and patient advocacy, please contact: Diana Kwast-Hoekstra, MScN.RN. Chair & International Patient Representative