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Wednesday, June 17 • 3:00pm - 4:00pm
Watch On Demand: Thinking beyond the ordinary: Optimizing medical communications for rare diseases

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“If you’ve seen one patient, you’re an expert. If you’ve seen two patients, you’re a world-renowned expert.” This opinion, expressed by an expert in an ultra-rare disease, underscores the intrinsic communication challenges for rare diseases. Rare diseases are often misdiagnosed, or there may be a significant delay between the presentation of symptoms and diagnosis. Additionally, there are very limited clinical trial data, magnifying the importance of effectively communicating available data. Despite these challenges, the passion of patients, caregivers, and physicians associated with rare diseases provides opportunities to reach beyond the traditional dissemination of trial endpoints.

By utilizing innovative medical communications strategies to reach diverse audiences and report on patient data, we can empower patients and physicians to recognize and care for patients with rare diseases. In this session, we will discuss several case studies that examine the roles of medical affairs, medical communications, and publication groups in medical education and scientific dissemination of rare diseases.

These case studies will highlight the development and modification of common tools, such as publication plans and scientific platforms, to suit the needs and opportunities of communicating on rare diseases. Additionally, we will provide examples of how medical communications can be used to expand and enhance physician networks and prepare others for appropriately diagnosing and treating patients. By the end of the session, the audience should gain knowledge about the communication challenges that are unique to rare diseases and be prepared to address these in several ways.
This session qualifies for ISMPP CMPP credit
This session qualifies for pharmacy CE credit

Learning objectives:
  • Tailor scientific platforms and plans for publications and medical affairs for rare diseases
  • Identify innovative ways to reach audiences
  • Leverage patient-level data to tell the scientific story
  • Use disease state education to expand the rare disease community

avatar for Scott Baver

Scott Baver

Medical Affairs Professional
Scott has been in Medical Affairs for about a decade in various different capacities. He has spent his time as a Medical Affairs professional in multiple disease states but has a passion for rare disease. Scott has dedicated his career to coming up with novel solutions to bring awareness... Read More →
avatar for Jeff Stumpf

Jeff Stumpf

Scientific Director II, MedThink SciCom
As a Scientific Director II, Jeff provides scientific direction to internal writers and account staff, as well as clients and external authors. He ensures the quality of medical communications through management, peer review, and collaboration with clients to understand and meet their... Read More →

Wednesday June 17, 2020 3:00pm - 4:00pm EDT