Scott Baver, Medical Affairs Professional
Jeff Stumpf, PhD, ISMPP CMPP, Scientific Director II, MedThink SciCom
“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, examples of how medical communications can be used to expand and enhance physician networks and prepare others for appropriately diagnosing and treating patients will be provided. By the end of the session, attendees should gain knowledge about the communication challenges that are unique to rare diseases and be prepared to address these in several ways.
Learning objectives:
Jeff Stumpf, PhD, ISMPP CMPP, Scientific Director II, MedThink SciCom
“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, examples of how medical communications can be used to expand and enhance physician networks and prepare others for appropriately diagnosing and treating patients will be provided. By the end of the session, attendees should gain knowledge about the communication challenges that are unique to rare diseases and be prepared to address these in several ways.
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
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