Medical Publications Planning
(Rare Disease)

January 29-30, 2020

Philadelphia, PA

Event Overview

Brainstorm & network with medical publication planning, medical affairs, medical education & patient advocacy professionals to evaluate the current landscape of rare disease professional & lay communications & identify solutions to increase the volume & accessibility of rare disease information for all stakeholders. This forum also will provide an interactive setting to discuss patient inclusion in rare disease clinical trial design, actionable recommendations for enhancing patient centricity & the pressing need for more plain language summaries

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 current rare and orphan disease publications
  2. Hear thought leaders talk about the FDA’s initiatives to include patient experiences in new drug approval procedures
  3. Learn actionable tactics for including the patient voice in rare disease clinical trial design
  4. Explore the enhanced role of medical affairs in rare disease
  5. Network with rare disease thought leaders from pharma, biotech, CROs, medical publications and patient advocacy

Attendee Profile

This conference is designed for rare disease and orphan drug senior leaders and executives, including:

  • Clinical/Scientific/Medical Affairs
  • Clinical Research
  • Medical Strategy/Communications
  • Medical Information
  • Medical Education
  • Publication Planning
  • Patient Services
  • Medical/Scientific/Patient Communications
  • Patient Advocacy
  • Medical Conference Planners

Wednesday

January 29th, 2020 | Day 1

8:00 AM - 9:00 AM

Registration & Continental Breakfast

9:00 AM - 9:30 AM

Day 1 Opening Remarks

9:30 AM - 10:15 AM

KEYNOTE ADDRESS:
Rare Disease Literature – Rare & Different

The quantity of rare disease literature is disproportionally lower than that of other diseases.

In this keynote session, delegates will:

  • Evaluate the rare disease literature landscape
  • Examine the reasons why rare disease communications and publications are rare and different
  • Look at including patient advocates and caregivers in authorship teams
  • Explore why open access to information is important 

Dan Donovan - Founder
rareLife Solutions

10:15 AM - 10:30 AM

Morning Networking & Refreshment Break

10:30 AM - 11:15 AM

Knowledge Transfer Challenges in Rare Disease

Rare disease medical publishing faces unique challenges that other disease categories do not encounter. 

In this session, attendees will:

  • Discuss the challenges of small sample size and non-traditional clinical design on rare disease medical publishing 
  • Explore the current landscape and future trends of patient centricity in rare disease medical publishing
  • Identify solutions to expand open access to rare disease communications and publications

11:15 AM - 12:00 PM

Medical Affairs in Rare Disease

In rare disease, the role and responsibilities of medical affairs are magnified.

This session will cover:

  • Evolution of the medical affairs function in rare disease
  • Magnified outward facing communication functions 
  • Increased internal corporate and clinical responsibilities

Ronald Walls, MD - US Head of Operations, & Business Development, Vice President Clinical Development Medical Affairs 
The CSPC Pharmaceutical Group

12:00 PM - 1:00 PM

Networking Lunch

1:00 PM - 1:45 PM

Transitioning from Small Biotech to Mid-size Pharma

For decades, small, scientific-minded companies have focused on rare diseases and orphan drugs. When a small company evolves into a mid-size one, what changes are needed to keep the company competitive?

In this session, participants will learn about:

  • Small biotech’s role in bringing orphan drugs to market
  • Impact of drug commercialization on internal processes and thinking
  • Necessary relationships between publishers and mid-size pharma to market drugs

VIELABIO COMPANY - Invited

1:45 PM - 2:30 PM

CASE STUDY

Session topics will include:

  • Real Life case study overview
  • Techniques for communicating imperfect clinical trial results
  • Lesson learned

ZEALAND PHARMA - Invited

2:30 PM - 3:00 PM

Afternoon Networking & Refreshment Break

3:00 PM - 3:45 PM

PANEL - Medical Publications & Global Medical Communications

A panel of experienced medical writers, publishers and communications directors will discuss the challenges to publish in rare disease.

3:45 PM - 4:15 PM

Open Forum Q&A

4:15 PM - 4:30 PM

Day 1 closing remarks

Thursday

January 30th, 2020 | Day 2

8:00 AM - 9:00 AM

Networking Breakfast & Registration

9:00 AM - 9:30 AM

Day 2 Introduction

9:30 AM - 10:15 AM

Including the Patient Voice in Clinical Trial Results

Pharmaceutical companies in Europe submit patient diaries and experiences along with clinical trial results for new drug approvals. The FDA is calling for similar requirements in the USA.

This session will:

  • Explore the FDA’s initiatives to include patient experiences in new drug approval applications
  • Examine methods for enhancing clinical focused medical communications by adding patient pre-diagnosis personal data
  • Highlight the benefits of publishing patient diaries as easily understandable information for the lay community
  • Discuss alternatives for including patients in clinical trial design and informing patients as soon as clinical trial results are known

AGIOS PHARMACEUTICALS - Invited

10:15 AM - 10:30 AM

Morning Networking & Refreshment Break

10:30 AM - 11:15 AM

PATIENT ADVOCATE PANEL: Open Access to Rare Disease Communications

Patient advocates will discuss current rare disease communications trends and forward-thinking recommendations for future initiatives with a focus on open access.

Panel will discuss:

  • Types of rare disease medical literature patients and caregivers are seeking 
  • Importance of reporting clinical trial results to patients in a timely manner
  • Enhancing knowledge transfer with plain language lay summaries
  • Looking forward: recommendations and suggestions for meeting patients and caregivers’ needs for rare disease medical publications and communications 

Panel Moderator:

Sheila BosePresident
SB LifeSciences Consulting, Inc.

Panelists (invited):

Susan Stein, MPH - Director, Patient Advocacy
Agios Pharmaceuticals
Director/Board Member
Global Genes

Dakota Fisher-VanceFounder
Young Adult Cancer Connection
Patient Advocacy Manager
Horizon Therapeutics

CUREDUCHENNE - Invited

11:15 AM - 12:00 PM

Industry Challenges to Accepting & Integrating Patients, Advocates & Caregivers (PACs) as Authors

Why have life sciences companies, heavily involved in rare disease medical publications and with a huge vested interest in PACs been slow to include them as authors?

This presentation will:

  • Explore the benefits and challenges of integrating PACs into authorship teams
  • Discuss PAC’s influences on empowering patients globally with plain language medical publications and communications
  • Evaluate PACs effects on pharma, biotech and medical equipment companies to address patients’ needs in medical publications

Peter Snyder - Sr. Director, Global Publications, Oncology Medical Affairs
AstraZeneca

12:00 PM - 1:00 PM

Networking Lunch

1:00 PM - 1:45 PM

CHALLENGES OF PRESENTING RARE DISEASE ABSTRACTS FOR A BROAD AUDIENCE

Education, inspiration and actionable takeaways – this session will examine challenges in delivering rare disease presentations that are fit for the purposes they need to meet.

Topics include:

  • Challenges of presenting abstracts to mixed audiences -- medical professionals and patients
  • Differences between the delivery and perception of verbal presentations compared to printed publications
  • Current landscape and future trends
  • Best practices for conveying a message that is fit for the purpose the need to meet

Takdea - Invited

1:45 PM - 2:30 PM

Rare Disease Publications & Communications by Life Stages & Age

Where are teenagers and young adults turning for medical information, emotional support, advice and plain language summaries of abstracts and clinical trial results?

Participants in this session will:

  • Discuss the what is missing in rare disease communications by life stages and age
  • Identify the kinds of medical literature patients and caregivers are looking for at different life stages
  • Explore the quantity and quality of rare disease medical publications segmented by life stages
  • Examine the role of of social media as a resource for rare disease information teens, young adults and adults

Dakota Fisher-VanceFounder
YOUNG ADULT CANCER CONNECTION
Patient Advocacy Manager
HORIZON THERAPEUTICS

2:30 PM - 2:45 PM

Afternoon Networking & Refreshment Break

2:45 PM - 3:30 PM

BRAINSTORMING SESSION for Medical Communications Rare Disease

This forum will provide a platform to:

  • Identify current rare disease information and ease of finding these resources
  • Explore options to increase the visibility, quality and quantity of rare disease communications in rare disease publications
  • Examine the trending landscapes for digital and social media communications

Dan Donovan - Founder
rareLife SOLUTIONS

3:30 PM - 4:00 PM

Day 2 closing remarks

Dan Donovan - Founder
rareLife SOLUTIONS

FEATURED SPEAKERS

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Ronald Walls

The CSPC Pharmaceutical Group

US Head of Operations, & Business Development, Vice President Clinical Development Medical Affairs

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Dakota Fisher-Vance

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Dan Donovan

rare Life SOLUTIONS

Founder

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Cristina Damatarca

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Jina Shah

CONFERENCE REGISTRATION


ATTENDEE PRICING

ON-SITE

Register at Event

$2,096

STANDARD

After 12/12/19

$1,896

EARLY BIRD

Available for

$1,696

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

Advertising Package Sponsorship

Exhibit Booth Package Sponsorship


MEDIA PARTNERS

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PREMIER MEDIA PARTNER