Insightful Moments: My VIBE
by PTC Therapeutics
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.
Episodes
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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 Alliance and Children's Hospital of Philadelphia in King of Prussia, Pennsylvania, where she spoke with a...
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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 Duchenne Muscular Dystrophy in Arizona. In today’s episode, Paula Orandash is speaking with…
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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 Ataxia Research Alliance and Children's Hospital of Philadelphia in King of Prussia, Pennsylvania…
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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 people who are connected to the rare disease community – whether as parents, caregivers, or as patients...
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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 people who are connected to the rare disease community – whether as parents, caregivers, or as patients...
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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 of America in New Orleans where she continues to speak with people who have been affected by...
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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 Huntington's Disease Society of America in New Orleans where she spoke with people who have been...
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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 Dallas, which is the foundation’s first hybrid workshop fully in Spanish for families affected by...
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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 workshop in Dallas, which is the foundation’s first hybrid workshop fully in Spanish for families...
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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 workshop in Dallas, which was the foundation’s first hybrid workshop fully in Spanish for families...
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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 in Vancouver where she spoke to many individuals affected by Phenylketonuria (PKU). PKU affects…
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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 in Vancouver where she spoke to many individuals affected by Phenylketonuria (PKU). PKU affects…
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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 in Vancouver where she spoke to many individuals affected by Phenylketonuria (PKU). PKU affects…
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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 Duchenne Muscular Dystrophy. In this episode, Paula Orandash speaks with guests Ben and Ryan…
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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, caregivers, and families affected by Duchenne Muscular Dystrophy. For today’s episode, we continue to…
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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 disease community - from diagnosis to overcoming challenges and building a supportive community. It’s...
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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 want to tell YOUR real-life stories and experiences from the rare disease community to inspire and...
About this show
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.
Hosted by
PTC Therapeutics