At its core, PTC’s Patient Engagement team is deeply committed to understanding the patient experience. The team knows firsthand the importance of making direct connections and building relationships with people in the rare disease community. Working closely with patients, caregivers and patient advocacy groups, their goal is to offer support, connection, and resources that address the needs of the rare disease community.
We recently sat down with Paula Orandash, Patient Engagement Liaison, to learn more about the team’s latest resource: My VIBE: My Voice is Inspirational, Brave and Empowering, an audio platform where the rare disease community can share their stories.
How did the idea and concept for My VIBE come about?
Paula: As part of the Insightful Moments educational resources, I recognized that people learn in different ways. I reflected on the various resources we’ve used including live virtual webinars, animated videos, roadmaps summarizing the materials, and audio. The audio component became My VIBE: My Voice is Inspirational, Brave and Empowering.
Can you describe the goal of My VIBE?
Paula: My VIBE gives patients, caregivers, families, and friends a forum to share their story and journey living with a rare disease. The goal is for the community to hear directly from the person affected by rare disease, and for the person to know that their voice is important.
How did this program come to be?
Paula: The initial thought around using audio recordings came from a desire to provide educational resources to the rare disease community in a different format (especially knowing the large audience for podcasts out there!). The audio approach for My VIBE seemed to be a wonderful way to provide the rare disease community with a platform to tell their story, and in turn, help other families who face similar challenges and concerns.
What is unique about My VIBE?
Paula: Families feel that My VIBE is a safe space where they can share intimate and raw feelings. Also, we’re able to travel to different patient advocacy group meetings across the rare disease community with our traveling recording booth.
My VIBE gives families an understanding that PTC Therapeutics really cares about them and wants to learn about their life and disease state from their point of view.
Were the initial activations what you envisioned when you first started conceiving of the idea?
Paula: I knew families wanted to share their stories; however, I never expected the overwhelming response from the community. Everyone I spoke with was so grateful for the opportunity to talk about themselves and their family. In return, they hope that their story will help others. Also, it did not take many questions from me to get families talking! Once I opened the floor to them, they took it from there and felt comfortable to share.
Describe the benefit of this program to patients and caregivers.
Paula: The short answer is that families know they are not alone and that their journey is important to us. We had a lot of laughter and tears, both providing a healing atmosphere. My VIBE also gives families an understanding that PTC Therapeutics really cares about them and wants to learn about their life and disease state from their point of view.
What are your hopes for the future of My VIBE?
Paula: I hope to continue to bring My VIBE to more advocacy group meetings. The more families we reach, the more their stories can be heard and help others. I would also like to add additional recordings to include themes such as the diagnostic journey; transitioning from pediatric to adulthood; siblings; and mental wellness.
In addition to the families, I too have been so grateful for this opportunity. I am thankful for PTC’s forward thinking and allowing My VIBE to be a part of our educational platform.