Industry experts share unique ways their firms help clients working in the rare disease space.
PhD, President, Dudnyk
One of the strongest ways we support our clients in the rare disease space is through our efforts to create meaningful and long-lasting emotional connections through the programs and tools we develop for patients, caregivers, communities, and HCPs.
We have learned that first, you must earn the trust of your customers, then discover the most meaningful ways to fulfill their needs, and finally, offer support to every patient, regardless of whether or not they are on the client brand. Once we have a deep understanding of their needs, we can engage the HCP specialists to improve patient identification and diagnosis, optimize the treatment experience, and achieve the best possible outcomes.
When our rare disease clients take this approach, the authenticity of their intentions manifests itself in real customer engagement and a greater belief in the company that is providing the solution, with no patient ever feeling left behind.
Managing director, 81qd
Rare diseases present an array of challenges to patients, their families and caregivers, and physicians. Arriving at an early and accurate diagnosis is a rate-limiting step to getting patients the care they so desperately need.
At 81qd, we leverage proprietary AI-driven analytic solutions that help identify patients with a high probability of having a specific rare disease so that they can ultimately be screened, clinically diagnosed, and receive the appropriate care.
For a rare ophthalmologic condition, it was thought about 3000 patients in the US were affected each year. One client asked us to investigate further, and our analytic platform uncovered nearly 8000 patients who likely had this condition. Based on these results, our client initiated clinical development of a treatment for the condition.
81qd also helps clients identify influential clinicians with the greatest concentration of relevant patient(s) with rare diseases, which allows for highly effective, personalized, and multi-channel engagement strategies to support patient/customer educational programs.
CEO, Guidemark Health
Guidemark Health developed a solution for clients in rare diseases to learn from a community in order to build programs that address urgent needs. The program, a Health Action Community (H.A.C.) event, was born from our belief that big challenges require collaborative, creative, and diverse solutions.
It is exciting to inspire people to take time of out their busy schedules to ideate solutions that can make a real difference for communities impacted by significant health challenges.
For example, our H.A.C. MBC (metastatic breast cancer) event focused on addressing the unique needs of this community, which are largely unrecognized by the public. Extensive research and collaboration between patient advocacy, community leaders, providers, and industry were key success factors. Teams worked to generate unique solutions to address unmet needs and final presentations were evaluated and scored by an esteemed judging panel. The winning idea is being developed into a program through CancerCare.
EVP, innovation, The Bloc
Collectively, rare diseases aren’t rare at all. And they represent an increasingly significant proportion of the pharma industry. Our experience can be categorized into three focus areas – driving awareness and diagnosis, informing treatment choices, and collaborating on insights related to outcomes. Each of them require distinct approaches.
Our work with clients in the genomics space has helped develop a team with fairly unique capabilities in multiple categories of rare diseases across global markets.
Data validity increases with size and rare diseases are often caught in that conundrum, which is why how we communicate complexities of variable interpretation in a scientific context is a rare skill – one that is critical for an effective rare disease marketing team. We look forward to continue building it.