Rare Disease Medical Publication and Digital Communication Planning

Making Accurate Rare Disease Medical Messaging Available and Accessible

January 29-30, 2020

Philadelphia, PA

Event Overview

Rare disease patients, advocates, caregivers and life science professionals need easily accessible, accurate information, including plain language summaries. Medical writers face challenges in rare disease publishing. Join us at this conference, designed to:

  • Examine the quantity and quality of currently available rare disease publications and digital communications
  • Identify solutions to the challenges of publishing in rare disease
  • Learn results from recent studies on “voice of the patient” information needs in publications and digital communications
  • Discuss authorship roles and integrating patients, advocates and caregivers into authorship teams
  • Better understand FDA recommendations for including the patient voice in patient-reported outcomes
  • Hear from NORD about non-profits’ initiatives to provide printed and digital information through webinars and videos

This conference will benefit Life Science professionals from pharmaceutical and biotech companies, clinical research organizations, medical publications and rare disease foundations and organizations.

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. Evaluate the quality and quantity of rare disease publications and digital communications
  2. Discuss best practices to overcome publishing challenges in rare disease
  3. Learn results from recent studies with rare disease patients about their medical information needs
  4. Hear first-hand cases studies about publishing in rare disease
  5. Network with Life Sciences thought leaders from pharma, biotech, CROs, medical publications, patient advocacy, foundations and non-profits specializing in rare diseases and orphan drugs

Attendee Profile

This conference is designed for Life Science professionals from pharmaceutical and biotech companies, clinical research organizations, medical publications and digital communications, foundations and organizations, medical education, patient advocacy and patient engagement

  • Publication Planning
  • Digital Communications Planning
  • Medical Messaging Strategy
  • Patient Advocacy/Patient Services
  • Patient Education
  • Medical Affairs
  • Medical Directors
  • Medical Science Liaisons
  • Clinical Affairs
  • Clinical Trials Professionals
  • Medical Conference Planners
  • Medical Education
  • Marketing
  • Product Launch
  • Product Management

FEATURED SPEAKERS

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Dan Donovan

rareLife solutions

Founder & CEO

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Peter Snyder

AstraZeneca

Sr Director, Global Publications, Oncology Medical Affairs

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Dakota Fisher-Vance

Young Adult Cancer Connection

Founder

Horizon Therapeutics

Patient Advocacy Manager

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Mukund Nori

rareLife solutions

Principal Medical Writer & Director, Medical Affairs

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Sheila Bose

SB Lifesciences Consulting, Inc.

President

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Sika Dunyoh

NORD

Director of Education Programs

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Shweta Rane

Alexion Pharmaceuticals

Director of Global Scientific Communications

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Julie Raskin

Congenital Hyperinsulinism International (CHI)

Founder & Executive Director

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José L Walewski

rareLife solutions

Senior Medical Writer

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Christina Ohnsman

REGENXBIO Inc.

Senior Clinical Development Lead

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Vivian Fernandez

REGENXBIO Inc.

Senior Director/Head of Patient Advocacy

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LaTasha Lee

ASH Research Collaborative

Senior Manager, Partnership Engagement Sickle Cell Disease Clinical Trials Network

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Diana Stefani-Hunyady

VELABIO COMPANY

Head of Medical Affairs

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Shauna H. Whisenton

ASH Research Collaborative

Manager, SCD Community Engagement Sickle Cell Disease Clinical Trials Network

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Gina D’Angelo

Shire a Takeda company

 Publications Lead

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Tahirah Austin-Muhammad

Crescent Foundation

MPH Chief Operations Officer

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Christina Roman

CYSTIC FIBROSIS FOUNDATION

Senior Manager of Community Engagement

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Mindy Cameron

LITTLE HERCULES FOUNDATION

Advocacy Director

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Elisabeth Fine

VOYAGER THERAPEUTICS, INC.

Senior Director, Medical Affairs & Operations

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Jon Kaskey

Within3

Senior Director of Business Partnerships

ADDITIONAL SPEAKERS

Rob Bedford

Within3

VP, Business Partnerships

CONFERENCE REGISTRATION


ATTENDEE PRICING

STANDARD

Available for
This Rate has Expired

$1,896

ON-SITE

Register at Event

$2,096

Register 2 Attendees, Get 1 Complimentary Registration*!

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

EVENT SPONSORS



SPONSOR THIS EVENT

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


MEDIA PARTNERS

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PREMIER MEDIA PARTNER