Elizabeth Izard Apelles, Greater Than One

Honeycomb Health is a nonprofit created to help people with rare diseases securely store, manage, and share comprehensive health information. By leveraging innovative technologies and inspired market solutions, Honeycomb unites patients, family members and healthcare providers in rare disease management.

When patients with a rare disease fail to receive a proper diagnosis, treatment plan, and therapy, they can suffer for years. Failed treatments for these prolonged conditions strain patients, caregivers, and the health ecosystem. In addition to the significant physical and emotional struggles these patients endure, delayed diagnoses for rare diseases can also result in many years of lost revenue for manufacturers.

Med Ad News talked to HVH Precision Analytics, a joint venture with Havas Health & You and Vencore specializing in AI and machine learning data analytics, about the company’s efforts at the forefront of rare disease work.

You’ve just accepted the most exciting role in your career – to launch your company’s promising Phase III rare disease drug candidate. So many things race through your mind, from the clinical trial program through the launch readiness plan. And then you stop. How will you differentiate your new brand from your competition so that you can win in a competitive market? How will you position your brand to set it up for success? Everyone you talk to will have an opinion.

Working in the rare disease space has never been more rewarding than it is today. Technology is turning what was once thought to be impossible into actual, tangible realities for physicians, patients, and families. There are many exciting advancements happening now – in real time – and even more on the horizon that demand our attention and advocacy to help bring them to light.

The first rule of rare: There are no rules. There are over 7,000 different rare diseases – each with its own symptomology, history, and clinical and political landscape. Most are virgin territory for marketers; only 5 percent have an approved treatment.

We are on the verge of a medical renaissance, a period of accelerated progress in the treatment and management of rare diseases. This reawakening also brings with it challenges that we must grapple with.