Rare Disease
Innovation in
Medical Affairs Summit
Innovation in
Medical Affairs Summit
HOSTED AT ALEXION
BOSTON, MA
September 16, 2026
Discover How Pharma is Unlocking the Power of Digital in Med Affairs to Deliver Better Experiences for Rare Disease Patients
The Rare Disease Innovation in Medical Affairs Summit will bring together pharma and rare disease leaders to explore how life sciences and medical affairs are measurably improving the customer experience by leveraging digital, while driving business impact.
PanAgora Pharma events are unique within the industry because attendance is limited to ensure each event is industry-led. Our goal at every PanAgora Pharma event is to maintain at least 60% attendance from pharmaceutical, medical device, and diagnostics companies.
Delegates of the Rare Disease Innovation in Medical Affairs Summit will have ample opportunities to network with fellow attendees, engage with speakers and panelists, and participate in interactive conference sessions and workshops.
PanAgora Pharma events are unique within the industry because attendance is limited to ensure each event is industry-led. Our goal at every PanAgora Pharma event is to maintain at least 60% attendance from pharmaceutical, medical device, and diagnostics companies.
Delegates of the Rare Disease Innovation in Medical Affairs Summit will have ample opportunities to network with fellow attendees, engage with speakers and panelists, and participate in interactive conference sessions and workshops.
Location
Alexion Pharmaceuticals
121 Seaport Blvd,
Boston, MA 02210
121 Seaport Blvd,
Boston, MA 02210
Date & Time
September 16, 2026
08:30AM - 04:45PM EST
Reception to Follow
08:30AM - 04:45PM EST
Reception to Follow
PRESENTED BY
Why Attend the Rare Disease Innovation in Medical Affairs Summit?
PanAgora Pharma events are unique within the industry because attendance is limited to ensure each event is industry-led. Our goal is to maintain at least 65% attendance from pharma, medical device, and diagnostics companies (mainly comprised of senior-level medical affairs, clinical trials, commercial and rare disease program directors within those organizations). This is done to create a peer-to-peer knowledge sharing and learning environment that prioritizes meaningful relationship building amongst like-minded pharma business leaders.
Speaking Faculty
CO-HOST
Bhaskar Dutta
Head, Digital Health and Medical Affairs Technologies
Head, Digital Health and Medical Affairs Technologies
CO-HOST
Taiba Quiraishi
Innovation Accelerator Lead
Innovation Accelerator Lead
Conference Agenda - September 16, 2026
07:30 AM
REGISTRATION AND NETWORKING
Welcome Breakfast hosted in the Exhibition Area
08:30 AM
Opening Welcome From Alexion
Why Digital Health Matters in Rare Diseases Now
Why Digital Health Matters in Rare Diseases Now
08:45 AM
Transforming Rare Disease Care Through Digital Innovation
This keynote provides a high-level view of how digital tools such as remote monitoring, digital biomarkers, telemedicine, patient platforms, and AI-enabled analytics are changing the rare disease landscape. It should also address current limitations, evidence expectations, and implementation challenges.
09:15 - 10:00 AM
Patient Centricity and the Patient Journey
- Identifying unmet needs through digital listening and patient insight generation
- Reducing diagnostic odyssey with digital tools and referral support
- Supporting adherence and self-management through apps and connected devices
- Ensuring equity and usability for small and diverse patient populations
- Empowering patients by demonstrating the burden of disease and patient-HCP communication
10:00- 10:30 AM
NETWORKING BREAK
10:30 - 12:00 PM
Clinical Development and Evidence Generation in Rare Disease
10:30 - 11:30 PM
Using Digital Health to Improve Rare Disease Trials and Data Generation
This session addresses how digital health can support clinical development in rare diseases, where recruitment, endpoint selection, and longitudinal data collection are often difficult. The conversation can cover decentralized trial elements, wearable technologies, electronic clinical outcome assessments, remote data capture, and digital endpoints.
11:30 - 12:00 PM
PANEL DISCUSSION: Clinical Development and Evidence Generation in Rare Disease
- Improving patient identification and recruitment
- Reducing trial burden through hybrid or decentralized approaches
- Capturing real-world and longitudinal data
- Validating digital endpoints and biomarkers
- Regulatory considerations for digital tools in development programs
12:00 - 1:00 PM
NETWORKING LUNCH
1:00 - 2:15 PM
Digital Health in Evidence Generation and HCP Engagement
1:00 - 2:15 PM
From Approval to Long-Term Value: Building Evidence in the Real World
This session explores how digital health tools can continue generating evidence after launch. Covering remote monitoring, registries, patient-reported outcomes, and connected platforms that support long-term follow-up in rare diseases.
1:45 - 2:15 PM
PANEL DISCUSSION: Digital Health in Evidence Generation and HCP Engagement
- Post-marketing evidence generation
- Measuring treatment impact in everyday care
- HCP engagement with digital health data
2:15 - 3:00 PM
Market Access and Payer Perspectives
- Post-marketing evidence generation
- Measuring treatment impact in everyday care
- HCP engagement with digital health data
2:15 - 3:00 PM
What Payers Need to See: Digital Health, Outcomes, and Access in Rare Diseases
This session focuses on how digital health-generated evidence may support payer discussions, reimbursement models, and value demonstration. In rare diseases, where uncertainty is often high and evidence bases are small, digital tools may help strengthen outcomes tracking and demonstrate broader value.
- Evidence expectations from payers
- Outcomes-based agreements supported by digital monitoring
- Demonstrating burden reduction for patients, caregivers, and healthcare systems
- Addressing affordability and evidence uncertainty
- The role of digital endpoints and real-world evidence in HTA and reimbursement discussions
3:00 - 3:20 PM
NETWORKING BREAK
3:00 - 4:30 PM
Commercial Value and Business Impact
3:00 - 4:30 PM
Defining the Commercial Case for Digital Health in Rare Diseases
This session addresses how digital health can create commercial value while supporting better patient outcomes. Featuring discussions where digital investments can drive measurable impact; including diagnosis acceleration, initiation support, adherence, persistence, evidence generation, and stakeholder engagement.
3:00 - 4:30 PM
PANEL DISCUSSION: Defining the Commercial Case for Digital Health in Rare Diseases
- Building the business case for digital health investments
- Defining value drivers across the brand life cycle
- Key performance indicators for digital initiatives
- Addressing diagnosis odyssey using digital health
4:30 - 4:45 PM
KEY TAKEAWAYS, NEXT STEPS, AND CLOSING REMARKS
The conference chair will summarize key themes, highlights actions for cross-functional teams, and outlines potential next steps such as pilot programs, partnership models, or evidence-generation plans.
4:45 - 6:00 PM
NETWORKING RECEPTION
Sponsors & EXHIBITORS
HOST SPONSOR
SILVER SPONSOR
EXHIBITOR
EXHIBITOR
MEDIA PARTNERS
Sponsorship & Exhibition Opportunities
Venue for the Rare Disease Innovation in Medical Affairs Summit
Venue: Alexion Pharmaceuticals
121 Seaport Blvd, Boston, MA 02210
121 Seaport Blvd, Boston, MA 02210
This year's Rare Disease Innovation in Medical Affairs Summit will be hosted on-site at Alexion, a global biopharmaceutical company focused on developing and delivering life-changing therapies for patients with rare diseases.
Don't Miss the Rare Disease Innovation in Medical Affairs Summit!
