WHY EMPOWERED BY US?

No Just Represented - Respected.

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

OUR WORK - STRATEGIC THEMES

What We Do

• 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.

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.

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.
• "This is food for thought."
  – Senior EU Health Official, after reviewing our framework input
• 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.
• "You're not just participating – you're leading."
  – Healthcare Executive, post-roundtable
• 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.