Recent meetings
No recorded meetings with EU commissioners.
Mission & Goals
Empowered By Us is an independent, patient-led strategic advisory initiative operating at the intersection of rare disease policy, health system design, and equitable access. It connects lived experience with policy, governance, and innovation processes, engaging EU institutions, national authorities, and cross-sector stakeholders to support more coherent, inclusive, and implementable health systems. Its work focuses on strengthening how rare disease priorities are translated into policy and practice, particularly in areas where fragmentation, misaligned incentives, or structural barriers affect access and outcomes. Core activities include policy and systems design, structured multi-stakeholder dialogue, equitable access frameworks, and integration of lived experience into decision-making processes.
EU Legislative Interests
EU Health, Pharmaceutical and Access Policy: EU Pharmaceutical Strategy for Europe EU Critical Medicines Act EU Health Technology Assessment Regulation (HTA), including Joint Clinical Assessment (JCA) EU4Health Programme 2021–2027 Innovation and Data Frameworks: European Health Data Space (EHDS) European Biotech Act Inclusion and Rights Frameworks: European Strategy for the Rights of Persons with Disabilities 2021–2030 European Accessibility Act UN Convention on the Rights of Persons with Disabilities (CRPD)
Communication Activities
Contribution to EU-level discussion on rare disease access: Contribution to policy positioning on equitable access to medicines, reflecting patient-informed perspectives in the context of EU pharmaceutical and access policy. Concept paper on HTA and orphan drug access: Co-authorship of a policy concept paper on flexible HTA approaches and access pathways for orphan medicines, shared with European Commission services and European Parliament stakeholders in the context of the EU Pharmaceutical Strategy, HTA Regulation, and Critical Medicines Act. Concept development on access pathways for orphan medicines (“Orphan Track” model): Co-authorship of a policy framework proposing adaptive approaches to HTA and reimbursement for orphan medicines, shared with European Commission services and European Parliament stakeholders in the context of the EU Pharmaceutical Strategy, HTA Regulation, and Critical Medicines Act.
Interests Represented
Advances interests of their clients
Member Of
Empowered By Us is an independent initiative and is not formally affiliated with any association, federation, or umbrella organisation. It engages in collaborative dialogue with stakeholders across EU policy, research, and industry. The founder contributes as a volunteer Mental Health Ambassador with EURORDIS and as a contributor to the IRDiRC Task Force on Stigma in Rare Diseases.
Organisation Members
Empowered By Us is not a membership-based organisation and does not have members or affiliated entities.
Additional Information
Single-person entity operating on a project-based model. Client work does not involve representation of client interests vis-à-vis EU institutions. EU-level engagement is conducted independently.