3rd Medical Affairs & Rare Disease

East Coast

November 5-6, 2020

Online Livestream

Event Overview

The new coronavirus has paralyzed our world, but older diseases remain as dangerous as ever. Rare disease patient needs have become even more challenging in an age of social distancing and fears of contagion.

To help serve the patients who are under the most risk and are least able to wait for society to reopen, Dynamic Global Events invites you to participate in the 3rd annual Medical Affairs & Rare Disease conference, this year held entirely streaming online. At a time when people are forced to stay apart, this forum helps you unite multi-stakeholder teams across functions, organizations, and therapeutic areas, in order to solve problems and identify rare disease solutions.

The Inn at Penn, a Hilton Hotel

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3600 Sansom St,
Philadelphia, PA 19104
(215) 222-0200

Hotel Website

Special Event Rate
Book Today!

About the Chairperson

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Dr. Matthew T. Roe has been a faculty member at Duke University School of Medine and the Duke Clinical Research Institute (DCRI) since 1999. As a senior investigator at the DCRI, he has been the principal investigator for numerous phase II-IV cardiovascular clinical trials and is currently a co-principal investigator for the ADAPTABLE trial—the first large-scale pragmatic trials being conducted in the PCORnet network. He has also served in leadership roles for several observational registries focusing upon the treatment and outcomes of patients with cardiovascular disease and has served as the Director of the DCRI Clinical Research Fellowship since 2010.

Featured Speakers

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Craig Lipset

Head of Clinical Innovation
Pfizer

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Jeff Kingsley

Chief Executive Officer
IACT Health 

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Dawn Anderson

Managing Director, Life Sciences Strategy and Operations, R&D Practice
Deloitte

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Ross Friedberg

General Counsel & Chief Privacy Officer
Doctor on Demand

Top Reasons to Attend

  1. Maps for adapting rare disease development and outreach to a post-COVID world
  2. Detailed strategies for ensuring patient centricity in rare disease clinical trials
  3. Tools for spotting and avoiding the most urgent mistakes that can strike a rare disease program
  4. Insights for building and learning from cross-disciplinary teams
  5. New visions for the medical affairs must-haves for both small and large pharma

Attendee Profile

This conference is designed for senior leaders and executives in pharmaceutical, biotech, and medical device companies responsible for:

  • Rare Disease
  • Orphan Drugs
  • Gene Therapy
  • Medical Affairs
  • Medical Messaging
  • MSL
  • Clinical Affairs
  • Patient Affairs
  • Patient Outreach
  • Patient Engagement
  • Patient Advocacy
  • Medical Publication
  • Planning
  • eClinical
  • Health Economics & Outcomes Research

Thursday

November 5th, 2020 | Day 1

9:00 AM - 9:15 AM

Chairperson’s Opening Remarks

9:15 AM - 10:00 AM

Medical Affairs as the Strategic Driver Within an Organization

Isabel Firmino - Vice President, Head of Global Medical Affairs Therapeutic Areas
ALEXION PHARMACEUTICALS, INC.

10:00 AM - 10:45 AM

Building a Small Pharma Rare Disease Strategy that Avoids the Classic Obstacles to Drug Approval

Drug companies often don’t understand enough about the full preparation for rare disease drug approval, and this can be especially troublesome for small companies.  Often there is no sustainable or steady strategy, as projects change in multiple direction based on advice or requests from the board of directors.  How can you best plan for the finish line when you’re just getting started?  

  • Spot the warning signs of opening or closing too many studies
  • Avoid carrying out key steps in the improper order
  • Build a team culture of properly visualizing the goal from the outset

May Orfali - CMO
PYC THERAPEUTICS

10:45 AM - 11:00 AM

Networking Break

11:00 AM - 11:45 AM

Spotlight on the Medical Communications Skills Needed for Rare Disease

Ana Bozas - Associate Director, Medical Communications
AKCEA THERAPEUTICS

11:45 AM - 12:30 PM

Collaborative Public-Private Partnerships for Real World Evidence Collection and Expanded Access

Wendy White - Co-Founder
RAREITI

Natalie Douglas - Co-Founder
RAREITI

12:30 PM - 1:00 PM

Luncheon

1:00 PM - 1:45 PM

Collaborating Around Rare Disease

Jon Kaskey - Regional VP, Business Partnerships
WITHIN3

1:45 PM - 2:30 PM

Throw Away the Textbook and Listen to Your Patient: Monitoring a Disease of Exclusion

The biggest mistake providers make is following antiquated diagnostic criteria that neglects the real diversity of the phenotype.  For autoinflammatory and autoimmune disorders like Still’s Disease, current research lacks adequate tools for monitoring or quantifying both primary and secondary efficacy treatment endpoints.

  • Review advances in serology, targeted treatments, and key systemic findings
  • Target both pediatric and adult rheumatology and immunologists
  • Create earlier options for detection, research, and collaboration

Shalla Newton - Co-Founder
STILL’S DISEASE, THE 411

David Maher - Co-Founder
STILL’S DISEASE, THE 411

2:30 PM - 2:45 PM

Networking Break

2:45 PM - 3:30 PM

Creating Strategic Plans for Cross Functional Collaboration and Growth

Andy Overmyer - Head of Global Business Operations
AKCEA THERAPEUTICS

3:30 PM - 4:15 PM

Education, Advocacy, and Technology to Accelerate Rare Disease Progress

Joan Chambers - Senior Director, Marketing and Outreach
CENTER FOR INFORMATION & STUDY ON CLINICAL RESEARCH PARTICIPATION

Harsha Rajasimha - Founder
INDOUSRARE

Friday

November 6th, 2020 | Day 2

9:00 AM - 9:15 AM

Chairperson’s Recap of Day One

9:15 AM - 10:00 AM

HEOR to Determine the Value of Rare Disease Therapeutics

Ioannos Tomazos - Senior Director, Global HEOR
ALEXION

10:00 AM - 10:45 AM

Knowledge Transfer Challenges in Rare Disease

Shweta Rane - Director, Global Scientific Communications
ALEXION

10:45 AM - 11:00 AM

Networking Break

11:00 AM - 11:45 AM

PANEL: Expanding and Changing Role of MSLs in Rare Disease

Moderator:
Sheila Bose, President
SB LIFESCIENCES CONSULTING, INC.

Keri Kasun - Senior MSL, Rare Disease, Spinal Muscular Atrophy
BIOGEN

11:45 AM - 12:30 PM

Presentation by H1 INSIGHTS

Robert Consalvo - Director of Strategic Commercial Engagement
H1 INSIGHTS

12:30 PM - 1:00 PM

Luncheon

1:00 PM - 1:45 PM

Form Patient Advisory Panels to Reduce the Patient Burden to Participate

Patricia Roselle - Global Head, Patient Network Management
SANOFI

1:45 PM - 2:30 PM

Presentation by RARE LIFE SOLUTIONS

Dan Donovan - CEO
RARE LIFE SOLUTIONS

2:30 PM

PANEL: Inspire the Creation and Maintenance of Patient Advocacy Boards

  • Ensure regular interaction with the chronic illness patient and advocate community
  • Streamline communication with those doing the research and inspire them to do more
  • Expand genetic research efforts while keeping genetic information confidential and safe

Deborah Vick - Patient Advocate; Owner
CRAFTING4ACAUSE

FEATURED SPEAKERS

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Ana Bozas

Akcea Therapeutics

Associate Director, Medical Communications

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Isabel Firmino

Alexion Pharmaceuticals, Inc.

Vice President, Head of Global Medical Affairs Therapeutic Areas

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Shweta Rane

Alexion Pharmaceuticals, Inc.

Director of Global Scientific Communications

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Joan A. Chambers

The Center for Information & Study on Clinical Research Participation

Senior Director, Marketing & Outreach

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Sheila Bose

SB Lifesciences Consulting, Inc.

President

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Robert Consalvo

H1 INSIGHTS

Director of Strategic Commercial Engagement

Andy Overmyer

Andy Overmyer

Akcea Therapeutics

Head of Global Business Operations

Wendy White

Wendy White

GLOBAL GENES

Chairman

Co-Founder, RAREITI

Natalie Douglas

Natalie Douglas

GLOBAL GENES

Vice Chairman

Co-Founder, RAREITI

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Harsha K. Rajasimha

Jeeva Informatics Solutions Inc.

Founder and CEO

Founder Chairman, Indo US Organization for Rare Diseases

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Israel Gutierrez

Geron Corporation

Vice President, Pharmacovigilance and Drug Safety

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Dan Donovan

RARE LIFE SOLUTIONS

CEO

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Jon Kaskey

WITHIN3

Regional VP, Business Partnerships

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David Maher

STILL’S DISEASE, THE 411

Co-Founder

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Keri Kasun

BIOGEN

Senior MSL, Rare Disease, Spinal Muscular Atrophy

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Shalla Newton

STILL’S DISEASE, THE 411

Co-Founder

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Patricia Roselle

SANOFI

Global Head, Patient Network Management

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Ioannos Tomazos

ALEXION

Senior Director, Global HEOR

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Deborah Vick

CRAFTING4ACAUSE

Patient Advocate; Owner

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May Orfali

PYC THERAPEUTICS

CMO

CONFERENCE REGISTRATION


LIVE STREAM ATTENDEE

EARLY BIRD

Before 9/25/20

$796

STANDARD

After 9/25/20

$896

Register 2 Attendees, Get 1 Complimentary Registration*!

Interested in sending groups of 7 or more? Contact us directly for pricing.

EVENT SPONSORS


Scarritt Group - Official Media Partner

OFFICIAL LIVESTREAM PROVIDER


SPONSOR THIS EVENT

Contact Amy Chapman at (561) 571-7687 or achapman@dgeconfs.com

MEDIA PARTNERS


PM360 - Media Partner

PREMIER MEDIA PARTNER