What existing and future trends do marketers in the rare diseases area need to be mindful of to optimize their efforts?
EVP, creative director, Dudnyk
Our first and greatest challenge in the rare disease space is finding patients.
Currently, the majority of healthcare professionals are unfamiliar with rare diseases, and patients are usually misdiagnosed or experience significant and extended delays in receiving accurate diagnoses — and that needs to change.
With incredible advancements in rare disease treatment on the horizon, the need for more accurate and timely diagnoses is absolutely critical.
If these cutting-edge treatments, such as CNS gene therapies, are approved by the FDA, we will be able to treat rare diseases that before had little-to-no treatment options. Knowing the potential impact of these therapies, doctors should be more inspired than ever to find the underlying causes of their patients’ symptoms — knowing that by doing so, they may tremendously improve the lives of affected patients and their families.
VP, learning strategy, Guidemark Health
Newer and emerging technologies hold great potential for addressing barriers that characterize the rare disease journey — gaining a proper diagnosis, lack of awareness for a given disease, access to the right specialists, and getting the proper medical treatment, to name a few. As a result, best practices are more contemporary and successful against obstacles those navigating this complex ecosystem face.
These practices include connecting patients with small, but mighty grassroots advocacy organizations to improve support systems; leveraging telemedicine to connect patients with specialists; grounding education in adult learning and health literacy principles to make the complex clear; and using simulation-based learning to educate through real-world case studies.
These trends are changing the landscape of rare disease, leading to earlier diagnosis while easing psychosocial burden.
Practice leader, U.S. PR and marcomms, Health Unlimited
As fewer blockbuster drugs are discovered and many large population health concerns are “solved,” more compounds are being explored for rare diseases.
This puts communicators in new territory. No longer are large DTC campaigns the most effective way to reach impacted communities. Because each rare disease community has different needs, goals, and history, communicators must develop a deep understanding and empathy for the patient experience before they try to share any of their clients’ messages.
Transparency is a critical component, especially for stakeholders who remain hopeful despite having experienced often heartbreaking letdowns.
It is critical comms are authentic to the community and responsibly acknowledge the realities of developing drugs for rare diseases.
Director, digital services group, Cambridge BioMarketing
In a constantly evolving world of tech advancements, we must be mindful of how innovation can shape our marketing strategies.
Machine learning, AI, the internet of things, and big data are some of the tools at our disposal to disrupt the industry and build better relationships between brand and consumers. These techniques can help design omnichannel experiences for patients and HCPs in rare disease. Machine learning and AI can predict patterns in behavior and big data to target and predict where the user is and what they need. It can also track their behavior across each channel.
This is especially important in rare disease, where the prevalence is small and the patients are even more empowered and connected.