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.

Event Sponsors
Conference
New Topics
Featured Speakers
Ana Bozas, PhD, CMPP
AD Global Medical Communications
Akcea Therapeutics
Andy Overmyer
Head of Global Business Operations
Akcea Therapeutics
Charlene Hafer-Macko
Associate Professor, Neurology
UNIVERSITY OF MARYLAND SCHOOL OF MEDICINE
Dan Donovan
Co-Founder & CEO
rareLife solutions
David Maher
Co-Founder
STILL’S DISEASE, THE 411
Deborah Vick
Patient Advocate; Owner
CRAFTING4ACAUSE
Harsha K. Rajasimha
Founder and Chairman, INDOUSRARE
Founder Chairman, Indo US Organization for Rare Diseases
Ioannos Tomazos
Senior Director, Global HEOR
ALEXION
Isabel Firmino
Vice President, Head of Global Medical Affairs Therapeutic Areas
Alexion Pharmaceuticals, Inc.
Israel Gutierrez
Vice President, Pharmacovigilance and Drug Safety
Geron Corporation
Joan A. Chambers
Senior Director, Marketing & Outreach
The Center for Information & Study on Clinical Research Participation (CISCRP)
Keri Kasun
Senior MSL, Rare Disease, Spinal Muscular Atrophy
BIOGEN
May Orfali
Chief Medical Officer
BIOASIS TECHNOLOGIES
Michele Johnson
Patient Advocate; Author
THE PAIN FREE PA
Michelle Gilmor
Senior Medical Director, Rare Disease
REGENXBIO
Natalie Douglas
Vice Chairman, GLOBAL GENES
Co-Founder, RAREITI
Patricia Roselle
Global Head, Patient Network Management
SANOFI
Robert Consalvo
Director of Strategic Commercial Engagement
H1 INSIGHTS
Robin Powers
Patient Advocate
Shalla Newton
Co-Founder
STILL’S DISEASE, THE 411
Shweta Rane
Director of Global Scientific Communications
Alexion Pharmaceuticals, Inc.
Wendy White
Chairman, GLOBAL GENES
Co-Founder, RAREITI
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 Partners
15
Speakers
21
Days
251
Participants
125
Workshops
90
Venue
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