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Connect Key Stakeholders to Drive Therapeutic Progress, Propel Commercial Strategies and Ensure Impactful Advocacy
December 2-4, 2020Hyatt Regency
Cambridge, MA
an informa business
Produced by:
LEARN MORE AT WWW.RAREDISEASE-SUMMIT.COM*This is preliminary conference information. Topics, agenda and speaker names are subject to change without notice.
CONFERENCE PREVIEW
As innovations accelerate for rare disease therapies and patients increasingly become partners in driving progress, it has never been more critical to bridge the gap between diverse stakeholders to ensure continuing development. Join advocates, life sciences companies, patients, researchers, investors and regulators at the Rare Disease Innovation & Partnering Summit to tackle challenges in furthering therapeutic and curative progress and ensuring patient access.
From exploring novel approaches to value demonstration and real-world evidence, to patient-driven innovations in clinical trial design and creative business and funding models, this comprehensive conference features diverse opportunities to gain best practices and optimize therapeutic progress. Driven by industry, advocacy and investor insight, this program provides an opportunity to align synergies across diverse stakeholders and increase the chances of therapeutic and commercial success within the rare disease marketplace. Join us to propel orphan product development by connecting with key stakeholders during targeted networking sessions and facilitated partnering.
Curated Content • Powerful Partnering • Innovative Insights • Strong Storytelling
Three Days of Unparalleled Content and Connections, Including:
Compelling Keynotes and Luminary Addresses
TWO STRATEGIC ONE-DAY FORUMS:
Global Drug Development and Access Patient Engagement, Advocacy and Alliance Management
FOUR TARGETED TRACKS:
Patient-Driven Progress Reimbursement, Value and Access
New Launch and Commercialization Partnering and Investment
Structured Networking and Partnering Opportunities
65+ Speakers
And much more to be announced!
If you are in the rare disease space this is the meeting to meet your peers and potential
partners and channels.
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This was my first Rare Disease Innovation & Partnering Summit, but it will not be my last. My time listening, learning and connecting with other passionate people was well worth the resources to attend. I specifically enjoyed learning about creative ways people are trying new tactics to bring valuable medicines to market. I was able to connect with a wide range of individuals that I had never had the chance to meet in-person before. I look forward to staying in the loop on the 2020 program and will plan to make it back.
LEARN MORE AT WWW.RAREDISEASE-SUMMIT.COM
2020 Advisory Board Members: Imran Babar, Chief Business Officer, Cydan; Co-Founder & Advisor, Tiburio Therapeutics
Jen Beachell, Vice President Commercial, Momenta Therapeutics
Alan Beggs, Ph.D., Director, The Manton Center for Orphan Disease Research, Division of Genetics & Genomics, Boston Children’s Hospital
Matt Boyd, Vice President of Regulatory Affairs Albireo
Jocelyn Duff, Co-Founder and Executive Director, Cure CMT4J
Jodie Gillon, Vice President, Patient Advocacy & Clinical Affairs Abeona Therapeutics
Candace Lerman, Founder, Rare Candace; Board Member, Our Odyssey
Ali Mohamadi, Executive Director of Patient Advocacy, Biomarin Pharmaceutical
Steve Roberds, Ph.D., Chief Scientific Officer, Tuberous Sclerosis Alliance
Alison Silva, President & Chief Executive Officer, Cotinga
Jeremy P. Springhorn, Chief Business Officer, Syros Pharmaceuticals
Wendy White, Chair of the Board, Global Genes
Martine Zimmerman, Senior Vice President, Head of Global Regulatory Affairs, Alexion
ACCLAIM FROM 2019 ATTENDEES
“Great topics and very well organized. Good balance of lots of topics but still covered in depth.”
“I found this event to be very well run and full of current and relevant information for individuals working within the rare disease space. There was a lot of information supplied and a lot of opportunities to meet companies that work to help the rare disease community.”
“The Rare Disease Summit was a great value for myself and my coworker who attended. We both felt that this area deserves more focus because every
area of all of our companies are being asked take on new responsibilities for developing therapies and supporting
patients in need. I’m not surprised that the attendance has grown
at such a high rate YOY!”
“I had such a great time at the event. I was able to network and meet people from all over the world and network and share my story and have that great connection/collaboration for future partnerships which is awesome in this rare disease world.”
DAY ONE WEDNESDAY, DECEMBER 2, 20208:00 Conference Registration and Continental Breakfast
9:00 Two Full-Day Concurrent Forums Begin
A. Global Drug Development & Access B. Patient Engagement, Advocacy & Alliance Management
4:00 Patient & Advocate Welcome & Orientation
4:00 INDUSTRY ROUNDTABLE Strengthen Business Decision-Making and Ensure Continued Innovation in a Complex and High-Risk Environment
5:15 Close of Day One | Networking, Wine and Cheese Reception Commences
DAY TWO THURSDAY, DECEMBER 3, 20208:00 Continental Breakfast
8:30 Conference Chair’s Review of Day One
8:15 KEYNOTE • Patient Perspective Address
9:00 KEYNOTE • Science Luminaries — Breaking Barriers towards Curative Progress
9:45 KEYNOTE • Navigate Evolving Regulatory Pathways and Evidentiary Requirements
10:30 Networking and Refreshment Break
11:00 KEYNOTE • Explore Novel Funding Models to De-Risk Drug Development
11:45 KEYNOTE • Leverage Artificial Intelligence to Improve Drug Discovery, Diagnosis and Therapeutic Progress
12:30 Networking Luncheon
1:30 Deep Dive — Explore New Developments and Approaches in the Pricing and Reimbursement Landscape
2:30 Networking and Refreshment Break
3:00 C H O O S E B E T W E E N F O U R F O C U S E D T R A C K S ( I - I V )
I. Patient-Driven Progress II. Reimbursement, Value and Access
III. New Launch and Commercialization IV. Partnering and Investment
5:30 Close of Day Two | Networking Reception Commences
DAY THREE FRIDAY, DECEMBER 4, 20208:00 Continental Breakfast
8:30 C H O O S E B E T W E E N F O U R F O C U S E D T R A C K S (1 - 4 )
1. Address Common Challenges in Creating
and Sustaining Impactful Advocacy Organizations
2. Optimize Development of Patient Services
and HUBs
3. Delve into Challenges in Collecting Utilizing
Real-World Evidence and Patient Registry Data
4. Explore New Clinical Trial Models and Patient-Centric
Protocol Developments
10:00 Networking and Refreshment Break
10:30 Changing the Paradigm in Rare Disease Drug Development — Rapid-Fire Industry Innovators Presentations Followed by Moderated Q&A with Presenters
11:45 The Future of Rare Disease Drug Development — Opportunities, Challenges and Where We Go Next
12:30 Conference Chair’s Closing Remarks & Close of Conference
2020 KEY FEATURES
The 2020 Summit Scholarship application deadline is September 4, 2020. Scholarship applications will open on December 13, 2019. For more information, visit www.raredisease-summit.com.
KEY POINTS OF CONTACT
STAY CONNECTED AND JOIN THE CONVERSATION
SPONSORS
Tweet your learnings #RareDiseaseSummit
Join our LinkedIn Community Patient Access
The 2020 Rare Disease Innovation & Partnering Summit Scholarships are awarded to rare disease patient organizations with 501(c)(3) tax-exempt status looking to attend the 2020 Rare Disease Innovation and Partnering Summit. 50 rare disease patient organizations will be elected to receive one of the follow tiers of scholarship:
TIER 1Complimentary registration for one (1) representative and one (1) night hotel accommodation (room, tax and fees only.)
TIER 2Complimentary registration for one (1) representative.
SCHOLARSHIP PROGRAM
AUDIENCE BREAKDOWN ONE-TO-ONE MEETINGS
Collaborating on your next big breakthrough or initiating a critical relationship can be a manageable process with partneringONE®. The process begins weeks ahead of face-to-face meetings with the objective of closing the deal when you meet onsite. Spend less time scrambling to manage information ahead of the conference and more time pinpointing ideal prospects. Let the system schedule a time and place for all your accepted meeting requests.
Matt Hannon [email protected]
Karen Hanover [email protected]
Jenna Cerulli [email protected]
Speaking Submissions & Agenda Details: Sponsorship & Exhibition Opportunities: Registration & Teams:
STAKEHOLDERS
• 42% Bio/Pharma Manufacturers
• 27% Patients & Advocates
• 17% Service & Solutions Providers
• 6% Researchers
• 6% Investors
• 2% Regulators & Policy Makers
EXPERIENCE
17% Founder, CEO,
C-level
18% Vice President
35% Director
12 Countries Represented
