Online Livestream
East Coast
3rd Medical Affairs & Rare DiseaseEast Coast
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.

Conference
New Topics
Featured Speakers
Ana Bozas, PhD, CMPP
Akcea Therapeutics
AD Global Medical Communications
Andy Overmyer
Akcea Therapeutics
Head of Global Business Operations
Charlene Hafer-Macko
UNIVERSITY OF MARYLAND SCHOOL OF MEDICINE
Associate Professor, Neurology
Dan Donovan
rareLife solutions
Co-Founder & CEO
David Maher
STILL’S DISEASE, THE 411
Co-Founder
Deborah Vick
CRAFTING4ACAUSE
Patient Advocate; Owner
Harsha K. Rajasimha
Founder Chairman, Indo US Organization for Rare Diseases
Founder and Chairman, INDOUSRARE
Ioannos Tomazos
ALEXION
Senior Director, Global HEOR
Isabel Firmino
Alexion Pharmaceuticals, Inc.
Vice President, Head of Global Medical Affairs Therapeutic Areas
Israel Gutierrez
Geron Corporation
Vice President, Pharmacovigilance and Drug Safety
Joan A. Chambers
The Center for Information & Study on Clinical Research Participation (CISCRP)
Senior Director, Marketing & Outreach
Keri Kasun
BIOGEN
Senior MSL, Rare Disease, Spinal Muscular Atrophy
May Orfali
BIOASIS TECHNOLOGIES
Chief Medical Officer
Michele Johnson
THE PAIN FREE PA
Patient Advocate; Author
Michelle Gilmor
REGENXBIO
Senior Medical Director, Rare Disease
Natalie Douglas
Co-Founder, RAREITI
Vice Chairman, GLOBAL GENES
Patricia Roselle
SANOFI
Global Head, Patient Network Management
Robert Consalvo
H1 INSIGHTS
Director of Strategic Commercial Engagement
Robin Powers
Patient Advocate
Shalla Newton
STILL’S DISEASE, THE 411
Co-Founder
Shweta Rane
Alexion Pharmaceuticals, Inc.
Director of Global Scientific Communications
Wendy White
Co-Founder, RAREITI
Chairman, GLOBAL GENES
Event Schedule

The biggest mistake providers make is following antiquated diagnostic criteria that neglects the real diversity of the phenotype.  For autoinflammatory 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

Rare is different. We know that. We hear time and again how important the voice of the patient is in drug development and commercialization. We buy into it. We believe it. We work to make it happen. But then, when it comes to some important decision makers, sometimes it feels as though there is no consideration for the rare disease patient in the determinations they render. This presentation will review 3 very recent experiences in which the plight of the rare disease patient was not considered.

  • Determine value of rare disease therapies
  • Use Real World Evidence to show orphan drug value and inform HTA evaluations 
  • Center the role of patients in demonstrating the impact of orphan drugs
  • 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
Register Now

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Event Sponsors
15
Speakers
21
Days
251
Participants
125
Workshops
90
Venue
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