Making “Rare” Culture More Common

When you hear the term “rare disease,” what do you think? With audiences ranging from pharmaceutical and biotechnology industries, patient advocacy groups, and other stakeholders who support patients, the answer gets complicated.

WE attended a session at the BIO International Conference last summer that focused on this topic, and the conversation went beyond the criteria used by the U.S. Food and Drug Administration, and argued the industry as a whole needs to better understand the experiences and challenges faced by patients with rare diseases. What does that mean for healthcare communicators? Simply, “rare” must be more than a designation. It must be a vital element that organizations understand and harness in their planning and execution of programs, services and clinical work that support afflicted patients.

This is important considering the profound change the healthcare industry is undergoing: driven by rapid technological advances that are accelerating scientific understanding of the genetics of diseases and steering researchers to new therapeutic targets for breakthrough treatments. Patients are feeling empowered to harness new technologies, including social media platforms and community-built disease databases, to drive these efforts.

These tools are amplifying patients’ voices and pushing the industry to focus on them from the start of clinical research to the approval and prescription of new medicines. They are overseeing foundations that fund early-stage drug discovery and collaborate with industry to collect data that’s essential to the development of treatments for debilitating diseases. The traits fueling these efforts — audaciousness, determination and perseverance — are built into the concept of “rare” as a culture, and industry needs to follow suit to ensure that patients receive all levels of support that they deserve. As part of an agency that sits at the intersection of transformation through communications, I can’t emphasize enough how important this mindset is to communications efforts.

WE is proud to stand with patients and Global Genes on Rare Disease Day. As patients, their families and foundations lead the way toward new treatments for rare diseases, the industry should instill those cultural values in their own organizations and marshal the resources needed to continue the drive toward a better tomorrow. Join WE in recognizing the importance of this topic.