The European Commission has launched a public consultation called “Enhancing the Strategy for the Rights of Persons with Disabilities up to 2030” as part of its plan to update the Union of Equality: Strategy for the Rights of Persons with Disabilities 2021–2030.
According to the main strategy page, the consultation and call for evidence opened in November 2025 and will run until February 2026, feeding into a 2026 Communication that will strengthen the existing ten-year strategy and its implementation across the EU.
Hosted on the Commission’s “Have your say” portal, the consultation invites people with disabilities, their representative organisations, carers, civil society, researchers, public authorities and other stakeholders to share views on how well the current strategy is working and what should change by 2030.
A democratic, rights-based survey
Through an online questionnaire, respondents can describe barriers they still face, highlight examples of good practice and suggest priorities for future EU action. The survey is grounded in a democratic, rights-based approach that recognises disabled people as rights-holders and experts in their own lives, in line with the UN Convention on the Rights of Persons with Disabilities. The Commission explains that personal data are collected only for the purpose of analysing feedback, are stored on secure servers and can be deleted or anonymised at the participant’s request.
An enhanced disability strategy has direct implications for how research, data infrastructures and innovation are designed across Europe. Stronger requirements on accessibility, reasonable accommodation and non-discrimination influence how clinical studies are planned, how information is provided and consent is obtained, and how digital tools, registries and virtual platforms are built.
When research environments and data systems are accessible, more people with different types of disabilities can participate safely, which leads to richer and more representative evidence on health, social inclusion and quality of life. In turn, better evidence helps policymakers and service providers identify remaining rights gaps and design measures that are more closely aligned with disabled people’s lived experience.
Links with ERDERA and rare disease ecosystems
For ERDERA and the wider rare disease community, the consultation is therefore not only a policy exercise but also an opportunity to support more inclusive and effective research ecosystems. Many rare conditions lead to long-term physical, sensory, intellectual or psychosocial impairments, so aligning the future EU disability strategy with the needs of people living with rare diseases can help ensure that clinical research networks, data services and expertise hubs are accessible by design.
By contributing to the online survey, patient organisations, disability advocates, researchers and data experts can document where rights are currently not realised in research and care, share examples of inclusive practice and propose concrete changes for the period up to 2030.
