Championing Creative & Patient-Centric Trial Designs with Early Advocacy Collaboration & AI-Driven Patient Identification to Improve Patient Awareness, Enrollment & Retention in Rare Disease Trials

Welcome to the 2nd Patient Recruitment for Rare Disease Trials Summit!

Identify, Engage, Recruit & Retain to Deliver Meaningful Patient Impact

The rare disease trial landscape stands at a pivotal tipping point. While unprecedented advances in trial design, digital tools, and regulatory flexibility are accelerating innovation like never before, the reality for patients remains stark: over 90% of rare diseases still lack an FDA-approved treatment. For many, clinical trials represent the only path to care, yet access remains uneven. Geographic isolation, diagnostic delays, and socioeconomic barriers continue to exclude many patients, especially from underserved communities, from participating in research.

Add to this the small, dispersed patient populations, high protocol complexity, and a shortage of disease-specific expertise, and it’s clear that traditional recruitment approaches no longer suffice.

Now in its second year, the Patient Recruitment for Rare Disease Trials Summit stands as the premier forum dedicated to closing this critical gap. Designed for leaders in Patient Recruitment, Clinical Operations, Patient Advocacy, and Medical Affairs this summit unites innovators reshaping rare disease trial access across the entire patient journey. Over three focused days, you’ll explore cutting-edge strategies spanning early patient identification to decentralized, patient-centric trial models that support participants from diagnosis through to long-term retention. Now is the time to accelerate creative recruitment strategies, deepen early patient engagement, and harness innovative technologies to ensure no rare disease patient is left behind in the race for transformative therapies.

2025 World-Class Speaker Faculty Includes:

Brittany Davis

Senior Director, Patient Advocacy & Insights

Avalyn Pharmaceuticals

Charles Shiner

Associate Vice President, Gene Therapy Marketing

Rocket Pharmaceuticals

Diego Cortina

Director, Global Pipeline & Value Evidence Strategy

Biogen

Fatima Scipione

Vice President, Global Patient Affairs

Blueprint Medicines

LaShell Robinson

Executive Director, Head Global Feasibility & Trial Equity

Takeda

Attend as a team. Leave with a strategy.

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Align Strategy Across the Entire Rare Disease Trial Journey

Unite cross-functional teams around shared challenges - from early patient identification and trial design to education, retention, and reimbursement - for a more seamless, patient-first approach to clinical delivery.

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Tackle Cross-Departmental Challenges in One Place

Bring your colleagues from clinical operations, patient engagement, medical affairs, and access to break down silos and address interconnected pain points with actionable, cross-functional solutions.

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Benchmark Against Industry Innovators

Learn directly from senior leaders at companies like Takeda, Biogen, Alexion, and Blueprint Medicines to understand what’s working across the rare disease trial landscape - and how you can apply it in your own programs.

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Empower Your Team with Fresh Tools & Strategies

From new decentralized tools and data-sharing platforms to advocacy partnerships and flexible trial designs, equip your team with proven tactics to enhance patient-centricity and trial success.

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Maximize Value with Group Savings

Secure up to 20% off your pass with team discounts - and ensure your entire team walks away aligned, inspired, and ready to deliver on your rare disease trial goals.