My VIBE: Every Story Deserves to be Told

Last year, the PTC U.S. Patient Engagement team created a new podcast called My VIBE: My Voice is Inspirational, Brave and Empowering – and the response from the rare disease community has been overwhelmingly positive. 

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. 

To capture this compelling content, the Patient Engagement team sets up their recording booth at advocacy conferences around the U.S., inviting patients, caregivers and families of those living with rare diseases to share their stories. So far, My VIBE has 10 live episodes, covering a variety of topics, with more episodes to come.

We recently connected with Paula Orandash, Patient Engagement Liaison, to check in on the project after its first year, learn more about the positive response from the advocacy community and hear about what’s next. Learn more about how the project started here.

Looking back on this first year of My VIBE, what have you loved the most about this program? 

Paula Orandash: For me, it was the opportunity to sit one-on-one and listen to some of the most personal stories. I felt honored that families felt safe to talk with me and share their intimate feelings. The best thing about recording My VIBE is that we feel like we are the only people in the room; everything and everyone else melts away. I had the privilege to laugh and cry alongside them, allowing all emotions to play an important part of their stories. Also, I am especially proud of our Spanish episodes. My VIBE has given the Spanish speaking community a platform to share their experiences and talk about how their culture impacts their journey. Their stories are very powerful.

Listen to one of the Spanish-language podcast episodes here.

What has surprised you the most about the My VIBE sessions you’ve held?

Paula: What surprised me the most was that all I had to do was ask one question: “Can you tell us about you and your family?” That is all it took to get them to talk about their feelings, their struggles, their hopes and their love for their family member (or themselves) living with a rare disease. It was cathartic for them to share their feelings and stories by telling them in their own words.

A family’s journey is their story to share; their emotions and experiences are truly their own. No one can tell their story for them, and My VIBE gives them the platform to express themselves in a safe space.

Paula Orandash Patient Engagement Liaison