Rare Disease Revolution: Access, Advocacy, and Amplification of the Patient Voice

Cofounder Lorna Weir joins KJT Panel to discuss amplifying the voice of rare disease patient

This was the backdrop for a recent KJT panel discussion, “Rare Disease Revolution: Access, Advocacy, and Amplification of the Patient Voice.” As an experienced marketer working in rare disease for over 15 years, Lorna Weir, Elevate Healthcare Marketing Cofounder and Managing Partner, lent her expertise to the panel.

During the panel discussion, Weir and other leaders in the space were challenged to focus on solutions to unique hurdles in the rare disease space. They discussed how marketing can play an important role in amplifying the patient voice, bridging the worlds between insights, advertising, digital solutions, and advocacy to best represent a rare disease patient, family and caregiver perspective.

A key question the panel addressed was, “What do you see as the one or two most critical gaps in the care of patients with rare diseases?”

“You can’t look across the journey and not be really struck by the number of barriers and gaps that patients face across that journey,”  Weir observed. She went on to note that the research shows it can take 5+ years to get a rare disease diagnosis. During that time, there are incredible burdens that these patients and their family and caregivers face, particularly health implications, emotional implications, and the financial burden.  Weir underscored her point of how we could best help overcome some of these burdens—by shortening the time they’re experiencing them whenever and however possible. “Central to making advancements I think, in rare diseases is really accelerating that time to diagnosis because…so much stems from that.”

Closely related to that diagnosis gap is the need for these patients to get access to the high-quality care and specialists who have the experience and understanding to make a definitive diagnosis—and eventually, once diagnosed, making sure they get expanded access to genetic testing and coverage as needed.

“So really, just looking back at the very beginning of that journey, and driving that diagnosis and identification is critical,” concludes Weir.

Watch the “Rare Disease Revolution: Access, Advocacy, & Amplification of the Patient Voice” full panel discussion here.

KJT’s ClinicalVoice Community is a network of professionals in the healthcare field who share their thoughts and opinions to help the industry understand an expert’s perspective on various topics related to pharmaceutical and medical device products and services.