Co-Creating a New Standard
Empowered By Us is a rare disease inclusion initiative led by lived experience experts. We bridge policy, industry, and community to unlock what equitable access really means.
Why Empowered By Us?
We don’t speak for others.
We build the frameworks, coalitions, and narratives that drive lasting change. From Parliament roundtables to regulatory reform, we bring lived experience where it matters most: at the decision-making table.
- Strategic contributor to DG SANTE rare disease agenda
- Co-authored priorities with EU policymakers
- Invited collaborator to leading rare disease industry partners
- Host of the annual Policy & Perspectives roundtable
Not Just Represented – Respected.
Our Work
Access Equity
Challenging traditional value frameworks and fast-tracking inclusion.
Lived Experience Intelligence
Not anecdotal. Structural. Strategic. Actionable.
Systems Change Through Co-Creation
From HTA reform to roadmap design – we shape with, not for.
“We’re not here to be included. We’re here to design the system, together.”
– Sophie H. Turner, Founder, Empowered By Us
PARTNER WITH US:
FOR INDUSTRY, POLICY
& FUNDERS
You don’t need another advisory board. You need a strategic partner.
For Pharma + Biotech:
Co-create value frameworks with embedded patient logic. Align pipelines with lived experience outcomes that matter.
For Policymakers:
Ground your work in meaningful, cross-border patient-led insight. Unlock the inclusion potential of rare disease strategies.
For Funders + Foundations:
Invest in scalable models for trust, impact and visibility. Back a new generation of patient-led system changemakers.
“You’re not just participating, you’re leading.”
– Healthcare Executive, post-roundtable
WHAT WE’VE BUILT TOGETHER
Real World Impact, Co-Created
We’re not theorizing.
We’re building practical frameworks that reshape how rare conditions are understood, funded, and addressed – in policy and in practice.
- Advancing Fast-Track Access Models:
We’ve contributed to the development of new national-level proposals to accelerate access to orphan medicines, integrating patient logic into HTA and reimbursement thinking. - Designing the Future of Strategic Patient Involvement:
Our co-designed approaches are redefining how lived experience is embedded in system-level decisions. From value frameworks to advisory structures and roundtables. - Shaping Policy Conversations at the Highest Level:
We’ve been invited to share insights directly with EU institutions, MEPs, and national policymakers, using our experience to spotlight what equitable access really requires. - Creating High-Trust Collaborations with Industry:
Through direct, strategic engagement, we’ve built bridges with life sciences partners to go beyond patient engagement – towards shared responsibility and measurable change.