Rare Disease Innovation & Partnering Summit - Informa
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Rare Disease Innovation
& Partnering Summit
Hybrid Event: May 17-19, 2022 • Revere Hotel Boston Common • Boston, MA
CONNECT KEY STAKEHOLDERS TO
DRIVE THERAPEUTIC PROGRESS,
PROPEL COMMERCIAL STRATEGIES
AND INSPIRE IMPACTFUL ADVOCACY
Brought to you by: In Association with:
#RAREDISEASESUMMIT2022
INFORMACONNECT.COM/RARE
HYBRID CONFERENCE
Rare Disease Innovation and Partnering Summit will be delivered in a unique hybrid format. Whether you’re planning to attend
in-person or virtually, we have built a content-rich program to accommodate your needs.
ALL ACCESS EXPERIENCE
Almost two years later, unite with industry peers in-person! Enjoy networking,
benchmarking and idea sharing face-to-face to advance therapeutic progress in the Rare
Disease Community.
• Two and a half robust days of face-to-face content with industry trailblazers
• Customized breakout opportunities for tailored learning
• Open forum for benchmarking, Q&A and best practice sharing
• Partnering and meeting opportunities through the ConnectMe app
• In-person networking with colleagues and industry counterparts
• Everything included in the digital experience
NEW THIS YEAR! Join us May 18 at 5:15pm for Selections from The Disorder Channel.
Featuring a curated lineup of short films addressing the day-to-day challenges and
struggles of rare disease patients and their families. More information coming soon!
VIRTUAL EXPERIENCE
What’s included in the Virtual Experience Pass?
• Live streaming of select sessions during the in-person event (May 17-19, 2022)
• Access to the ConnectMe virtual platform
• Recorded presentations from the in-person event available on-demand for 10 business days
• The full attendee list with video chat, instant messaging and meeting request functionalities
• Access to the virtual exhibit hall and leading solution providers
2
ABOUT THE EVENT
Driven by industry, advocacy, policy and investor insights, the Rare Disease Innovation & Partnering Summit convenes diverse stakeholders
to discuss opportunities for continued innovation, advancement of impactful patient advocacy and acceleration of commercial strategy
success. Tackle challenges surrounding patient access, reimbursement, commercialization, launch, partnering and more, in this unique,
hybrid format. Join experts across the rare disease community, face-to-face or virtually, to unite in areas of unmet medical need and create
life-transforming therapies and breakthroughs.
WHO WILL I MEET? TYPICAL AUDIENCE BREAKDOWN
You will benefit from attending this event if you work for a
company that focuses on rare disease and orphan drugs and
BY STAKEHOLDERS
have responsibilities or involvement in the following areas:
42% Bio/Pharma Manufacturers
Market Access RARE DISEASE
27% Patients & Advocates
Orphan Drugs
17% Service & Solutions Providers
Commercial Strategy/Operations Reimbursement 6% Researchers
PRODUCT LAUNCH Payer Strategy MARKETING 6% Investors
2% Regulators & Policy Makers
Patient Support/Services Early/Expanded Access
Partnerships PORTFOLIO
MANAGEMENT STRATEGY
D E V E LO P M E N T Patient Advocacy
INVESTMENT AND NOVEL FUNDING BY FUNCTION
26% Patient Advocacy/Access/Support
24% Business/Corporate Development
15% Clinical/Medical/Regulatory Affairs
12% Executive Leadership/C-Level
9% Marketing/Comms/Brand
8% Partnering/Investments/Alliances
6% Policy
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UNPARALLELED INSIGHTS, THOUGHT-PROVOKING KEYNOTES
AND NOVEL CASE STUDIES FROM INDUSTRY TRAILBLAZERS
Imran Babar, Chris Garabedian, Chairman and CEO, Suzanne Morgan, PhD, MBA,
Manager, Xontogeny LLC; Portfolio Manager, Director, Patient Access Services
Lux Veritas Venture, PXV Fund, Perceptive Advisors; and National Accounts, NS Pharma
Former CEO, Sarepta Therapeutics
Ella Balasa, Shannon Murray Resetich,
Mark Grossman, Vice President
Cystic Fibrosis Patient Advocate Global Franchise Head, Rare Diseases,
of Business Development,
Sanofi
Gomo Health
Brigid Bondoc,
Of Counsel, Erik Olson,
Chelsey Hathaway McCarthy,
Morrison & Foerster Partner,
Executive Director,
Morrison & Foerster
The DDX3X Foundation
Tammy Boyd, MPH, JD,
Chief Policy Officer, Jim Palma,
Sanjeev Luther,
Black Women’s Health Imperative Executive Director,
President and CEO,
TargetCancer Foundation
Rafael Pharmaceuticals
Dr. Scott Burger,
Thomas Rossi, PhD,
Principal, Advanced Cell & Craig Martin,
CEO, Chief Executive Officer,
Gene Therapy
Global Genes Venthera
Nick Calla, Senior Vice President
John Maslowski, Bradford C. Sippy,
of Industry Relations,
Chief Commercial Officer, CEO & Founder,
Orsini Healthcare
Forge Biologics, Inc. Tremeau Pharmaceuticals
Everett Crosland,
Janet Maynard, MD, Amy Akers Teets, Head, Global
Chief Commercial Officer, Public Affairs Pompe and MPS
Director,
Cognito Therapeutics Sanofi Speciality Care, Sanofi
FDA/CDER/OND/ORDPURM
Wendy Erler, Vice President, Global Head Eva A. Temkin,
Sean McDade,
Patient Experience, STAR and Patient Founder and CEO, Partner, FDA and Life Sciences,
Advocacy, Alexion Pharmaceuticals PeopleMetrics King & Spalding
Monica Fay, Amanda Moore, Martine Zimmerman,
Senior Vice President, Medical Affairs, CEO, Global Head of Regulatory Affairs,
Apellis Pharmaceuticals Angelman Syndrome Foundation Alexion Pharmaceuticals
4
IN-PERSON EXPERIENCE
DAY ONE — TUESDAY, MAY 17, 2022 *Please note all times are listed in EST
7:30-8:30 Conference Registration and Continental Breakfast
8:30-8:45 Chairperson’s Welcome and Opening Remarks
Amanda Moore, CEO, Angelman Syndrome Foundation
8:45-9:30 PATIENT FIRESIDE CHAT
Strengthen Patient Relationships Authentically to Enhance the Therapeutic Development Process
Gain a comprehensive understanding of the needs of patients directly from a patient advocate to strengthen patient relationships and optimize
long-term patient engagement strategies.
• Build trust and credibility between industry and patient populations to gain patient interest, participation and collaboration
• Treat the patient as more than a consumer builds the foundation for patient relationships
• Recognize the barriers to patient empowerment and understanding patient burden
• Why the patient voice is critical from the inception and design of research and trials through drug development
• How to target small patient populations through advocacy organizations and social media
• Improve health literacy and ensuring transparency and simplicity in patient facing outreach and material
• The importance of maintaining patient relationships through dissemination of results as well as gathering feedback to strengthen future research
Ella Balasa, Cystic Fibrosis Patient Advocate
Amanda Moore, CEO, Angelman Syndrome Foundation
9:30-10:15 INNOVATIVE FUNDING SPOTLIGHT
The Search for Novel Funding — Prepare for and Expand Successful Partnering
• Discover how to prepare to receive funding and identify drivers of value
• Explore innovative ways to find partners for rare diseases, specifically ultra-rare diseases
• Hear best practices for advocacy groups to expand research funding
Chris Garabedian, Chairman and CEO, Xontogeny LLC; Portfolio Manager, Venture, PXV Fund, Perceptive Advisors; Former CEO, Sarepta Therapeutics
10:15-10:45 Putting Rare Disease Patients in the Heart of Clinical Research
• How to engage patients in clinical research
• How technology can enhance the patient experience
• Next generation eCOA/ePRO can drive new sponsor insights
• Practical examples how to engage patients successfully and reduce burden
Bruce Hellman, Co-Founder and Chief Patient Officer, UMotif
10:45-11:15 Networking and Refreshment Break
11:15-12:00 Understand the Rare Disease Patient Journey — Actionable Insights from Discovery to Access
Patient advocacy and engagement professionals are charged with helping ensure company-wide understanding of how patients experience
diagnosis, care, support and access. Insights from every stage of the patient journey inform multiple business-critical decisions and plans.
• Identify how the rare disease community can generate new and important insights
• Describe innovative ways of understanding and integrating patients and caregivers’ perspectives across the organization
• Consider the use of novel technologies to enhance knowledge of the patient experience
• Confirm appropriate ways to build respectful relations with patients and patient groups
MODERATOR: Cira Montreys, PhD, Chief Medical Officer, Propel Health
PANELISTS: Wendy Erler, Vice President, Global Head Patient Experience, STAR and Patient Advocacy, Alexion Pharmaceuticals
Jennifer McNary, Executive Director, Head of Patient Advocacy and Engagement, Fulcrum Therapeutics 5
12:00-12:45 Cutting Through the Headwinds — Advancing New Models to Enable Rare Disease Innovation to Continue to Thrive
In recent years, rare disease has become an increasing area of focus for investment, R&D and the application of innovative science and
technologies. We’ve seen growth in drug development among global biopharma, emerging biotechs with an emphasis in rare disease, as well as
creative advocate- and citizen-scientist-led partnerships and ventures. Market dynamics have shifted, however, and momentum is in jeopardy.
This panel will explore how patient communities, research institutions/COEs, VCs, industry and other stakeholders are and will work together to
ensure the tide continues to rise to meet shifting needs in rare disease.
Craig Martin, CEO, Global Genes
Rodney Samaco, Assistant Professor and Investigator, Baylor College of Medicine
Walt Kowtoniuk, Venture Partner, Third Rock Ventures
Giacomo Chiesi, Head of Global Rare Diseases, The Chiesi Group
Casey McPherson, CEO, To Cure A Rose Foundation
12:45-1:45 Networking Luncheon
1:45-2:30 CHOOSE BETWEEN TWO TAILORED BREAKOUT SESSIONS (A-B)
A. PATIENT DRIVEN PROGRESS B. RARE DISEASES & GENE THERAPIES:
Patients as Partners in Innovation SPECIALTY PHARMACY CONSIDERATIONS
In this breakout session, participants will be challenged to rethink and Clinical Management of Patients with Complex Conditions
redefine how we can collectively produce better outcomes for people
Nick Calla, Senior Vice President of Industry Relations, Orsini Healthcare
living with rare conditions, with a focus on:
• Increasing the centrality of the total patient in informing and guiding
innovative solutions
• Broadening approaches to generate data and deliver care
• Enhancing public-private partnerships grounded in improving
patient health
Shannon Murray Resetich, Global Franchise Head, Rare Diseases, Sanofi
2:30-3:15 CHOOSE BETWEEN TWO TAILORED BREAKOUT SESSIONS (C-D)
C. REIMBURSEMENT, VALUE AND ACCESS D. PARTNERING, INVESTMENT AND PORTFOLIO STRATEGY
Discover Patient Support Program Needs for Patients with Patients and Payers: Perspectives on Developing Gene Therapies
Rare Diseases for Rare Diseases
• Identify ways to customize patient support programs for patients Hear a case study example of BBS GT from the scientific rationale
with rare diseases to the expectation of the patients and the reality of the investors.
• Discuss how to ensure services are tailored to meet the needs of your Identify the disconnect between the stakeholders and explore how to
patient population and create a better patient experience overcome these challenges for all rare diseases.
• Create pathways and opportunities for additional patient support Philip Beales, BSc MD FRCP FMedSci, Professor of Medical and Molecular Genetics,
beyond coverage and access support University College London
• Hear how to best manage and improve outcomes and encourage
adherence through innovative benchmarks
Sean McDade, Founder and CEO, PeopleMetrics
Patrick Cary, Patient Access and Services Effectiveness Lead, Ultragenyx
6
3:15-3:45 Networking and Refreshment Break
3:45-4:30 CHOOSE BETWEEN TWO TAILORED BREAKOUT SESSIONS (E-F)
E. PATIENT DRIVEN PROGRESS F. NEW LAUNCH AND COMMERCIALIZATION
Roadmap to De-risk Commercialization of a Rare Disease Product Deep Dive into Lessons Learned for Launching Rare
Foundations and innovation in commercial planning for a rare Disease Products
disease launch. Hear real-world insights, including successes and struggles and
• Identify critical commercial planning activities to accelerate benchmark strategies on launching an ultra-rare product for small
forecast attainment populations.
• Assess key technology tools that can create greater visibility and • Consider the importance of vendor selection to fit unique needs,
responsiveness to market dynamics specifically hub services and data management and roadblocks with
• Hear real-world examples of common roadblocks and mitigation securing vendor services
strategies to avoid delaying your launch • Explore the meaning of precise case management
Beth Schurman, Partner, Herspiegel Consulting
• Discuss reimbursement challenges and the law of unintended
consequences
Vincent Piccioni, Manager, Herspiegel Consulting
• Assess the difficulties associated with site of care strategy
Suzanne Morgan, PhD, MBA, Director, Patient Access Services and National Accounts,
NS Pharma
4:30-5:15 CHOOSE BETWEEN TWO TAILORED BREAKOUT SESSIONS (G-H)
G. DRUG DEVELOPMENT AND INNOVATION H. PARTNERING, INVESTMENT AND PORTFOLIO STRATEGY
Is AI the silver bullet to Clinical Trials in Rare Diseases? Optimize Strategic Partnership Models and Investment for
Medical Artificial Intelligence is particularly data hungry according to Orphan Drug Products
an article by Cohen IG, Mello MM. And knowing that the availability Hear the opportunities of orphan drug investment in a post-COVID world.
of trusted and reliable rare diseases data is limited. What are the Life • Explore the current market and how the pandemic affected the
Sciences industry to do? In the 2020 Rare Disease Patient Summit, projection of opportunity
OpenText and InformaConnect, asked a panel of Rare Diseases subject • Hear strategic partnership models and valuation considerations
Matter Experts, how rare diseases can benefit from technology. Attend
Imran Babar, Manager, Lux Veritas
this breakout session to learn the advisory group’s recommended
approach to leveraging technology in clinical trials as it relates to rare Craig Martin, CEO, Global Genes
disease clinical trials.
Ferdi Steinmann, Sr. Global Industry Strategist, Life Sciences, OpenText
Jen Horonjeff, Founder and CEO, Savvy Cooperative
Megan Murphy, Global Lead, Patient Advocacy, Biogen
5:15-6:15 Networking Wine and Cheese Reception
7
DAY TWO — WEDNESDAY, MAY 18, 2022 *Please note all times are listed in EST
8:00-9:00 Continental Breakfast and Networking
9:00-9:10 Chairperson’s Welcome and Review of Day One
Amanda Moore, CEO, Angelman Syndrome Foundation
9:10-10:00 TECHNOLOGY SPOTLIGHT
Developing and Scaling Digital Therapeutics for Rare Diseases
Uncover the opportunities and challenges of utilizing digital therapeutics for rare disease. Hear insights from digital heath leaders to discuss
health economic evidence development strategy and value-based commercial partnerships strategy for applying a novel modality, in the form of
personalized digital medicine, to a rare disease.
MODERATOR: Laura Randa, CEO and President, Toivoa Therapeutics
Everett Crosland, Chief Commercial Officer, Cognito Therapeutics
Mark Grossman, Vice President of Business Development, Gomo Health
Sarah Ernst, Senior Director, Digital Strategy and Partnering, Sanofi
10:00-10:45 How Decentralized Approaches Can Support Rare Disease Patient Participation in Research Studies
Rare Disease clinical study participation is inherently challenging for patients and families due to a combination of the burden of managing a
debilitating condition, the complexity of rare disease clinical studies and the potential need for long distance travel / relocation for patients and their
families. However, participation in research studies may be the only healthcare option available, it follows that we need to make participation as
easy and patient centric as possible. In this talk we will explore how the DCT approach may vary depending on the stage of drug development, drug
modality and how building the appropriate DCT elements into the study design, taking into consideration the patients’ needs, and allowing a flexible
approach can help alleviate some of the burdens for rare disease patients while supporting the unique challenges in Rare Disease drug development.
Joyce Moore, Head Rare Disease Solutions, THREAD RESEARCH
10:45-11:15 Networking and Refreshment Break
11:15-12:00 Reflect on the Impact of COVID-19 on the Rare Disease Community
Hear how rapid collaboration in the race to develop a COVID-19 vaccine affected progress and consider the path forward to create urgency to
further accelerate the development of treatments.
• Discuss the overall impact on the rare disease community
• Review lessons learned and how industry strategically responded to this challenge
• Explore how the pandemic affected research, clinical trials and drug development
• Hear how industry is pushing forward to further progress and future outlook for the year ahead
Jennifer McNary, Executive Director, Head of Patient Advocacy and Engagement, Fulcrum Therapeutics
Amy Akers Teets, Head, Global Public Affairs Pompe and MPS Sanofi Speciality Care, Sanofi
12:00-12:45 Identify Gaps and Develop Solutions to Promote Diversity, Equity and Inclusion
In addition to the many known challenges of finding a diagnosis and treatment for rare patients, disparities can hinder
the ability to receive diagnoses, access support services and representation in research and advocacy efforts.
• Discuss efforts supporting identifying and understanding gaps in support
• Hear how underrepresentation in research and clinical trials contribute to this problem
• Evaluate equity gaps concerning advocacy efforts
• Explore solutions to further progress in creating equally accessible care in the community
Craig Martin, CEO, Global Genes
Tammy Boyd, MPH, JD, Chief Policy Officer, Black Women’s Health Imperative 8
12:45-1:45 Networking Luncheon
SOLUTION SUMMIT
Why digital transformation might not living up to the Life Sciences industry’s expectations…
A closer look at “intelligent & agile information management” in rare disease clinical trials.
Ferdi Steinmann, Sr. Global Industry Strategist, Life Sciences, OpenText
1:45-2:30 PANEL
Fostering Effective Relationships Between Industry and Advocacy
Discover how to balance compassion and business strategy in a proactive approach to build and maintain a positive relationship between stakeholders.
• Explore new models and strategies to optimize collaboration and propel orphan drug development
• Develop a product lifecycle approach to advocate involvement and inclusion
• Build trust and credibility between industry and patient populations
• Align goals between stakeholders to optimize mutual benefits
• Discover how patient groups can best be impactfully and compliantly included throughout the therapeutic development process
Chelsey Hathaway McCarthy, Executive Director, The DDX3X Foundation
Monica Fay, Senior Vice President, Medical Affairs, Apellis Pharmaceuticals
2:30-3:15 CASE STUDIES
Uncover Risk Disclosures for Gene Therapies
• Outline the risks of gene therapy and how they have changed over the years as the science has improved
• Discover how the SEC thinks about risk disclosure, particularly in a situation where the risk isn’t just money
• Discuss the FDA’s role in controlling risk and balancing against benefits and cooperation with SEC
• Explore shareholder litigation
Erik Olson, Partner, Morrison & Foerster
Brigid Bondoc, Of Counsel, Morrison & Foerster
Dr. Scott Burger, Principal, Advanced Cell & Gene Therapy
3:15-3:45 Networking and Refreshment Break
3:45-4:30 Optimize Advocacy-Driven Decentralized Trials to Support the Future of Rare Disease Research
With the impact of COVID-19 on clinical trials, decentralized trials became imperative to continue progress in research. In addition, Patient
Advocacy organizations are playing a key role in both creating and driving rare disease studies. A case study of an advocacy initiated,
decentralized trial will be presented.
• Review the lessons learned from the use of advocacy initiated decentralized trials and benefits to participants
• Consider the concerns/challenges around data collection and integrity and how to address these issues
• Explore the benefits of utilizing these methods, specifically on recruitment and retention
Jim Palma, Executive Director, TargetCancer Foundation
4:30 Close of of Day Two
Registration for Selections from The DISORDER Channel
4:30-5:15 Selections from The DISORDER Channel features a curated lineup of short films addressing the day-to-day challenges and struggles of
rare disease patients and their families.
9
5:15-7:30 Selections from The DISORDER Channel Viewing and Reception
Opening Remarks: Bo Bigelow, Co-founder, Disorder: The Rare Disease Film Festival
Embracing Connections to Create Awareness, Fighting for Progress through Science, Diagnosis, and the
Hands-on Advocacy and Hope: Research Community:
Tess Is Not Alone: A USP7 Story YBRP and the Quest to a Cure
Timothy Syndrome Alliance Quest for a Cure
Menkes Disease: Finding Help & Hope
Counting Every Second
Suellen’s Story
DAY THREE — THURSDAY, MAY 19, 2022 *Please note all times are listed in EST
8:30-9:00 Continental Breakfast and Networking
Chairperson’s Welcome and Day Two Review
9:00-9:15
Amanda Moore, CEO, Angelman Syndrome Foundation
REGULATORY SPOTLIGHT
9:15-9:45 Navigate FDA Updates on Rare Disease Product Development
Janet Maynard, MD, Director, FDA/CDER/OND/ORDPURM
9:45-10:30 GLOBAL SPOTLIGHT
Compare Global Regulatory and Commercial Pathways for Orphan Drugs
• Identify some of the major differences in how US, British, European and other authorities regulate orphan drugs
• Assess the major regulatory guidance in place impacting development and approval
• Consider the elements of clinical data, strength of evidence, types of diseases treated and product modalities in development
• Explore how to build a globally accepted commercial strategy
Mike Page, Vice President Development Strategy, Regulatory & Quality Affairs, Alexion Pharmaceuticals
10:30-11:00 Networking and Refreshment Break
11:00-11:45 FIRESIDE CHAT
Bringing Back Rofecoxib (Vioxx) — Defining the Opportunity for an Opioid Alternative in Rare Disease
This Fireside Chat discusses how Tremeau Pharmaceuticals assessed the benefits and risks of bringing back rofecoxib (Vioxx) as an alternative
to opioids for treating hemophilic arthropathy, a rare, degenerative joint disease that is the leading cause of hemophilia morbidity. Key points:
• Assess the probability of success (clinical/regulatory)
• Address public perceptions
• Spark investor interest
MODERATOR: Peter Ciszewski, Publisher, Check Rare
PANELIST: Bradford C. Sippy, CEO & Founder, Tremeau Pharmaceuticals
1011:45-12:30 PANEL
Risks and Rewards of Rare Disease Drug Development — Highlight Opportunities and the Way Forward
Join experts to forecast the future of Rare Disease and the arising challenges and opportunities for advancement ahead.
• Discuss the imperative of continued innovation in a high-risk and rapidly evolving policy environment
• Explore trends and the outlook of 2022
• Hear key takeaways from trends and discussions throughout the program
MODERATOR:
Eva A. Temkin, Partner, FDA and Life Sciences, King & Spalding
PANELISTS:
Mike Page, Vice President Development Strategy, Regulatory & Quality Affairs, Alexion Pharmaceuticals
Sanjeev Luther, President and CEO, Rafael Pharmaceuticals
Thomas Rossi, PhD, Chief Executive Officer, Venthera
12:30 Close of Conference
“The summit is a must attend for anyone working with rare diseases and orphan
drugs. The programming addresses the needs of bio Pharma, nonprofit groups,
and patients. No matter what projects or challenges your group faces, this
program always delivers content that will assist you in your endeavors.”
STAY CONNECTED
AND JOIN THE follow us on LinkedIn follow us on Twitter follow us on Facebook
CONVERSATION Patient Assistance
#RareDiseaseSummit2022 @CBIConferences
and Access Network
11SPONSORS & EXHIBITORS
ASSOCIATION PARTNERS
The Alliance for Regenerative Medicine (ARM) is the preeminent international organization focused specifically on the issues
facing regenerative medicine and advanced therapies. We are advocates for progress in gene therapy, cell therapy, and tissue
engineering. Working with our members and policymakers, we foster investment, research & development, and successful
commercialization of safe, effective, and transformational therapies for patients around the world. https://alliancerm.org.
Global Genes is a 501(c)(3) nonprofit organization on a mission to connect, empower, and inspire the rare disease community.
We provide hope for more than 400 million people affected by rare disease around the globe; educate millions of people in more
than one hundred countries about rare disease; equip patients and advocates with tools and resources; and provide hundreds of
thousands of dollars in support for patient impact programs. If you or someone you love has a rare disease or are searching for a
diagnosis, contact Global Genes at 949-248-RARE or visit the resource hub at Globalgenes.org.
MassBio’s mission is to advance Massachusetts’ leadership in the life sciences to grow the industry, add value to the healthcare
system and improve patient lives. Representing 1,100+ biotechnology companies, academic institutions, disease foundations and
other organizations involved in life sciences and healthcare, MassBio leverages its unparalleled network of innovative companies
and industry thought leaders to advance policy and promote education, while providing member programs, events, industry
information, and services. Learn more at www.MassBio.org.
SUPPORTING SPONSORS
A GREAT PLACE TO MEET YOUR MARKET!
Maximize your access to decision-makers and align your brand with the life sciences industry’s premier thought-
leaders and industry innovators. Informa Connect’s custom sponsorship programs are designed to support your
organization’s overall business development and marketing initiatives through meaningful prospect and customer
interactions, brand assertion campaigns and content-rich thought-leadership opportunities. Capitalize on the
life sciences community’s premier platform for peer-to-peer exchange, solution driven content and first-in-class
networking opportunities. For more information on how to position your company as a sponsor or exhibitor, contact:
Karen Hanover
617-290-6113
karen.hanover@informa.com 12Ten Priority Commitments
at all Informa Events
Post COVID-19, all Informa events will be run in accordance with the AllSecure standard, applying the full
range of recommendations wherever applicable and possible, but with a commitment to ten key priorities:
Cleaning and Hygiene
ENHANCED CLEANING: PERSONAL HYGIENE: All Informa events will provide additional
1 All Informa events will undertake enhanced, deep cleaning before, during
and after our events, working with venue partners to ensure the highest
2 hand washing facilities and hand sanitising stations throughout
the event space, encouraging all participants to regularly wash
standards of hygiene and cleanliness. This includes continuous sanitisation and disinfect their hands.
throughout the course of an event, with a focus on high-touch areas such as
door handles, restrooms and food and beverage areas.
Physical Distancing
NON-CONTACT REGISTRATION: All Informa events will employ PHYSICAL CONTACT: All Informa events will request that participants
3 a system that facilitates non-contact registration for participants,
including the availability of online registration.
4 avoid physical contact, such as handshakes and embraces, promoting
alternative ways to greet business partners. The exchange of printed
materials, such as business cards and sales brochures, will also be
discouraged, with digital alternatives recommended.
PHYSICAL DISTANCING: All Informa events will maintain a density of FOOD AND BEVERAGE STATIONS: All Informa event teams will work
5 participants in line with local authority regulations and venue or other
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safety, minimising self-service buffets in favour of pre-packaged food
measures such as pre-show communications to participants, a one- options or serviced buffets. If any queuing is anticipated, physical
way traffic system around show floors, staggered and expanded distancing will be maintained through the use of floor markings and
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distance ambassadors.
Detect and Protect
PERSONAL PROTECTIVE EQUIPMENT (PPE): Participants and staff at FIRST AID: All Informa events will have access to a qualified first aider
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symptoms of COVID-19.
SCREENING: All Informa events will follow relevant health authority TRACE AND CONTACT: Should it be necessary, all Informa
9 guidance on screening participants. This may include checking the
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10 events will work with local authorities to trace and contact
participants at our events, subject to local privacy regulations.
other screening processes.
13REGISTRATION
REGISTRATION FEE STANDARD RATE VENUE INFORMATION:
REVERE HOTEL BOSTON COMMON
All Access Pass
Life Sciences (In-Person + Virtual)
$2299 200 STUART STREET | BOSTON, MA 02116
Manufacturers HOTEL DIRECT LINE: +1 617 482 1800
Virtual-Only $1899
ACCOMMODATIONS: For hotel room availability
and direct booking links, please visit the conference
All Access Pass website and select the Pricing & Venue tab.
Solution Providers/ (In-Person + Virtual)
$3099
Consultants/Law Firms Rooms are limited and the discounted rate will
Virtual-Only $2699 expire in advance of the meeting, so please book
early. All travel arrangements are subject to
All Access Pass availability. PLEASE NOTE: All hotel reservations for
Non-Profit/Academics/ (In-Person + Virtual)
$499 this conference should be booked directly with the
hotel using the above link only. Informa Connect
Patient Advocates does not partner with housing bureaus or third party
Virtual-Only $399
agencies for this event and none are authorized to
call or contact you on our behalf.
4 WAYS TO REGISTER NOW! CONNECT WITH US!
Content Development:
WEB
Callie Mertel
informaconnect.com/rare
Program Director
callie.mertel@informa.com • +1-860-328-0155
PHONE
Sponsorship & Exhibits:
+1-212-951-6702
Karen Hanover
Account Director
LIVE CHAT karen.hanover@informa.com • +1-617-290-6113
informaconnect.com/rare
Registration & Teams:
EMAIL Juliet Nelson
Sr. Professional Development Advisor
juliet.nelson@informa.com juliet.nelson@informa.com • +1-212-951-6702
Media Partners:
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