Empowered By Us

EU Legislative Interests

Core EU Health and Innovation Policies: - EU4Health Programme 2021–2027 - EU Pharmaceutical Strategy - Horizon Europe - EU Critical Medicines Act - European Biotech Act Digital and Data Frameworks: - European Health Data Space (EHDS) - Digital Health Action Plan Disability & Inclusion Frameworks: - European Strategy for the Rights of Persons with Disabilities 2021–2030 - European Accessibility Act - European Pillar of Social Rights Human Rights & Anti-Discrimination Instruments: - EU Anti-Discrimination Legislation - UN Convention on the Rights of Persons with Disabilities (CRPD)

Communication Activities

Call-to-Action for the Societal Inclusion of People Living with Dwarfism: Public campaign aligned with the EU Disability Rights Strategy and Pillar of Social Rights; included a flyer drop and policy brief shared with EU-level stakeholders. https://empoweredbyus.com/call-to-action Contribution to EU-level messaging on rare disease access: Supported development of a published policy statement amplifying patient-centered priorities on equitable access. Strategic input into rare disease policy discussions: Co-authored a concept paper on flexible HTA and orphan drug access, shared with relevant Commission services and Parliament stakeholders in the context of the EU Pharmaceutical Strategy and Critical Medicines Act.

Interests Represented

Promotes their own interests or the collective interests of their members

Member Of

Empowered By Us is an independent, self-owned initiative. We are not formally affiliated with any association, federation, or umbrella organisation. We maintain working relationships and collaborative dialogues with stakeholders across the policy, research, and industry landscape. We contribute to the national skeletal dysplasia community via ongoing collaboration with BVKM (Netherlands), a patient organization active in the Netherlands. Our founder also serves as a volunteer Mental Health Ambassador with EURORDIS, contributing to awareness and community dialogue. We are not funded by, nor formally affiliated with, any industry body, but we engage in structured co-creation and dialogue with pharmaceutical companies involved in rare disease access and inclusion.

Organisation Members

Empowered By Us is an independent, non-membership-based initiative. We do not have formal members. We collaborate with a wide range of stakeholders through project-based partnerships, strategic dialogues, and public-facing activities. One example is our Call to Action for the Societal Inclusion of People Living with Dwarfism, which is supported by various patient groups and organisations. A list of endorsers for that initiative is available here: https://empoweredbyus.com/call-to-action

Additional Information

Empowered By Us was formally registered in 2024. The 2024 financial year has been closed. No EU grants were received. A one-time community support grant from a private company supported a one-off awareness and community event in the Netherlands focused on the societal inclusion of people living with dwarfism, in alignment with the EU Disability Strategy. The annual cost estimate remains below €9,999 as Empowered By Us is self-owned and operated by a single person with limited capacity formally allocated to Empowered By Us (currently estimated at 10%). Office costs are limited to a home-based setup. Activities such as event coordination, travel, and stakeholder engagement are self-funded and project-based, with no salaried staff, membership dues, or paid consultants. This explains the low operational costs in proportion to the scope of activity.