Sophie H. Turner | Founder & Strategic Patient Advocate
Empowered By Us
Sophie H. Turner is the founder of Empowered By Us, a patient-led rare disease inclusion initiative working across Europe to embed lived experience, equity, and co-creation into access, policy, and system design. Based in the Netherlands, she collaborates with advocacy networks, research communities, and policy stakeholders to develop frameworks that centre underrepresented populations and accelerate equitable access. Sophie brings lived experience of achondroplasia and strategic expertise in shaping policy-aligned solutions. She is co-author of the Fast Track framework for orphan drug access in the Netherlands and contributes to EU-level dialogues on HTA reform, outcome alignment, and participatory research. She is also co-authoring a study on the psychological effects of public exposure for people with visible rare conditions. Her leadership focuses on transforming inclusion from a principle into infrastructure and building systems that reflect the communities they serve.
Appearances:
Day 1 - Tuesday 28 October @ 17:00
Panel: EU’s Rare Opportunity: Navigating the new Joint Clinical Assessment route in Europe
Invited:
GBA, H-AS, NICE
Jakub Dvořáček, Deputy Minister, Ministry of Health of Czech Republic – tbc
Adrian Goretzki, President, Healthcare Education Institute – tbc
Day 2 - Wednesday 29 October @ 11:15
Panel: Defining the building blocks to enhance the research and therapeutic development pathway to be more psychologically informed
To raise awareness of the psychological burden of research participation in rare diseases and to highlight how industry can take practical steps to make research and therapeutic development pathways more psychologically safe and supportive.
Objectives
Expose the blind spot: show how research processes can unintentionally increase psychological distress for PLWRD and families.
Connect to industry priorities: demonstrate how embedding psychosocial support improves recruitment, retention, and quality of outcomes.
Highlight practical entry points: identify short-term actions industry can adopt (e.g., psychologically informed consent, peer support access, staff training).
Bridge to ECRD 2026: signal that a deeper co-creation of systemic solutions will follow at ECRD, without pre-empting it.
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