Insightful Moments: My VIBE
Everyone in the rare disease community has a story and every individual, every parent, every caregiver has a unique story to tell. Insightful Moments: My VIBE is here to tell those stories. We want to tell YOUR real-life stories and experiences from the rare disease community to inspire and remind listeners that we’re all in this together.
- Update frequency
- every 33 days
- Average duration
- 43 minutes
- Episodes
- 17
- Years Active
- 2022 - 2025
Friedreich's Ataxia Symposium Part 1
Welcome back to Insightful Moments: My VIBE, presented by PTC Therapeutics. In this episode, Emily Hintze attended the Friedreich's Ataxia Symposium hosted by the Friedreich's Ataxia Research Allianc…
The Parenting Challenge
Welcome back to another episode of Insightful Moments: My VIBE, presented by PTC Therapeutics. It is Day 2 at the 28th annual PPMD conference for physicians, caregivers, and families affected by Duch…
Friedreich's Ataxia Symposium Part 2
Welcome back to another installment of Insightful Moments: My VIBE, presented by PTC Therapeutics. Previously, Emily Hintze attended the Friedreich's Ataxia Symposium hosted by the Friedreich's Ataxi…
Global Genes RARE Advocacy Summit - Part 2
Welcome back to Insightful Moments: My VIBE, presented by PTC Therapeutics. In this episode, Paula Orandash attended the Global Genes RARE Advocacy Summit in San Diego where she spoke with many peopl…
Global Genes RARE Advocacy Summit - Part 1
Welcome back to Insightful Moments: My VIBE, presented by PTC Therapeutics. In this episode, Paula Orandash attended the Global Genes RARE Advocacy Summit in San Diego where she spoke with many peopl…
The Effects of Huntington’s Disease - Part 2
Welcome back to another episode of Insightful Moments: My VIBE, presented by PTC Therapeutics. This is part 2 of host Paula Orandash at the 38th annual convention of the Huntington's Disease Society …
The Effects of Huntington’s Disease - Part 1
Welcome back to the first episode of the second season of Insightful Moments: My VIBE, presented by PTC Therapeutics. In this episode, host Paula Orandash attended the 38th annual convention of the H…
Duchenne Sibling Experience (Spanish Episode)
Welcome back to another episode of Insightful Moments: My VIBE, presented by PTC Therapeutics. Karina Lambertini, Patient Engagement Liaison at PTC, is attending the Akari Foundation workshop in Dall…
The Unconditional Love of Duchenne Caregivers (Spanish Episode)
Welcome back to Insightful Moments: My VIBE, presented by PTC Therapeutics. On this episode Aurora Flores and Karina Lambertini, Patient Engagement Liaisons at PTC, are attending the Akari Foundation…
Perspective from a Duchenne Mom and Healthcare (Spanish Episode)
Welcome back to another episode of Insightful Moments: My VIBE, presented by PTC Therapeutics. On this episode, Aurora Flores, Patient Engagement Liaison at PTC, is attending the Akari Foundation wor…
Navigating Independence with PKU with Maridith, Lauren, and Abigaill
Welcome back to another episode of Insightful Moments: My VIBE, presented by PTC Therapeutics. In this episode, Paula Orandash attended the National PKU Alliance Challenge the Summit 2022 Conference …
Living with PKU, with Linda and Kendall
Welcome back to another episode of Insightful Moments: My VIBE, presented by PTC Therapeutics. In this episode, Paula Orandash attended the National PKU Alliance Challenge the Summit 2022 Conference …
Advocating within the PKU Community
Welcome back to another episode of Insightful Moments: My VIBE, presented by PTC Therapeutics. In this episode, Paula Orandash attended the National PKU Alliance Challenge the Summit 2022 Conference …
Independence and Assistance with Ben and Ryan
Welcome back to another episode of Insightful Moments: My VIBE, presented by PTC Therapeutics. Recently we visited the 28th Annual PPMD conference for physicians, caregivers, and families affected by…
Sibling Support
Welcome back to another episode of Insightful Moments: My VIBE, presented by PTC Therapeutics. It is part 2 of day 1! Host Paula Orandash is at the 28th annual PPMD conference for physicians, caregiv…
Finding Out You Have a Rare Disease
Welcome to the first episode of Insightful Moments: My VIBE, presented by PTC-Bio! Join host Paula Orandash as she speaks to patients and their families about their unique experiences in the rare dis…
Welcome to Insightful Moments: My VIBE
Everyone in the rare disease community has a story, and every individual, every parent, and every caregiver has a unique story to tell. Insightful Moments: My VIBE is here to tell those stories. We w…