Your Comprehensive Guide to Patient Recruitment for Rare Disease Trials Summit
Whether you're running a trial for a rare neurological disorder, launching a global gene therapy study, or building support programs around ultra-small populations, the 2nd Patient Recruitment for Rare Disease Trials Summit is your strategic launchpad.
Who Should Attend?
This summit brings together cross-functional stakeholders advancing rare disease clinical trials. If you're involved in designing, running, or supporting trials for hard-to-reach patient populations, this event is built for you.
You’ll be in the right room if you work in:
- Patient Recruitment & Patient Advocacy
- Medical Affairs & Clinical Operations
- Clinical Trial Tech & Decentralized Trial Teams
- Market Access, Reimbursement, and Trial Logistics
You’ll join 70+ leaders from companies like Biogen, Takeda, Teva Pharmaceuticals, Genentech, Tenaya Therapeutics, and Sarepta Therapeutics, sharing what’s worked - and what hasn’t - when it comes to recruiting, retaining, and supporting rare disease patients through clinical trials.
What You’ll Learn:
Across three content-rich days, you’ll gain practical, cross-functional strategies to improve every stage of the trial journey:
Increase Identification & Accelerate Enrollment
Navigate the complexities of rare disease patient identification with cutting-edge digital tools, decentralized trial platforms, and AI-driven patient matching. Learn how to overcome recruitment bottlenecks by leveraging global rare disease registries, partnerships with patient advocacy groups, and innovative outreach strategies tailored to hard-to-reach populations.
Empower Education & Strengthen Advocacy
Gain insights into tailored patient and caregiver education programs that build trust and empower engagement throughout the trial lifecycle. Explore the role of advocacy groups and community networks in co-creating educational content and support services that address cultural, linguistic, and logistical barriers to participation.
Optimize Trial Design & Improve Retention
Dive deep into adaptive and hybrid trial designs that minimize patient burden while maximizing data quality. Examine strategies for maintaining patient motivation and compliance, including remote monitoring, telehealth integration, and personalized communication plans. Discover how protocol flexibility and patient-centric scheduling improve retention rates in rare disease trials.
Accelerate Reimbursement & Enable Secure Data Sharing
Understand the evolving regulatory frameworks and reimbursement models designed for rare disease therapies. Explore innovative data-sharing solutions that ensure compliance with global privacy laws, enable real-world evidence generation, and facilitate collaborative decision-making between sponsors, regulators, and payers to accelerate market access.