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Insightful Moments: My VIBE
PTC Therapeutics
17 episodes
1 week ago
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.
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Kids & Family,
Society & Culture,
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All content for Insightful Moments: My VIBE is the property of PTC Therapeutics and is served directly from their servers with no modification, redirects, or rehosting. The podcast is not affiliated with or endorsed by Podjoint in any way.
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.
Show more...
Personal Journals
Kids & Family,
Society & Culture,
Health & Fitness,
Medicine
Episodes (17/17)
Insightful Moments: My VIBE
Friedreich's Ataxia Symposium Part 1
Emily Hintze sits down with guests who are affected by Friedreich's Ataxia to discuss the connection between physical and mental health, and more.
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2 months ago
57 minutes 45 seconds

Insightful Moments: My VIBE
The Parenting Challenge
Paula Orandash speaks to parents with children affected by Duchenne Muscular Dystrophy, to learn about how they are finding and sharing support.
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11 months ago
59 minutes 28 seconds

Insightful Moments: My VIBE
Friedreich's Ataxia Symposium Part 2
Emily Hintze is joined by two guests who are affected by Friedreich's Ataxia to discuss their journeys and transformations into advocates for F.A.
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1 year ago
31 minutes 43 seconds

Insightful Moments: My VIBE
Global Genes RARE Advocacy Summit - Part 2
Paula Orandash sits down with three mothers of children with diagnosed rare diseases to discuss their journey as a mother and a caregiver.
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1 year ago
43 minutes 47 seconds

Insightful Moments: My VIBE
Global Genes RARE Advocacy Summit - Part 1
Paula Orandash sits down with patients and their loved ones affected by undiagnosed diseases to discuss the impact on their lives.
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1 year ago
58 minutes 55 seconds

Insightful Moments: My VIBE
The Effects of Huntington’s Disease - Part 2
Paula Orandash sits down with patients and their loved ones for part 2 of our discussion on the impact of Huntington's Disease.
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2 years ago
57 minutes 4 seconds

Insightful Moments: My VIBE
The Effects of Huntington’s Disease - Part 1
Paula Orandash sits down with patients and their loved ones to discuss the impact of Huntington's Disease.
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2 years ago
1 hour 4 minutes 29 seconds

Insightful Moments: My VIBE
Duchenne Sibling Experience (Spanish Episode)
Karina Lambertini is joined by siblings of those diagnosed with DMD, to hear their experience and learn more about how they support their loved ones.
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2 years ago
19 minutes 14 seconds

Insightful Moments: My VIBE
The Unconditional Love of Duchenne Caregivers (Spanish Episode)
Aurora and Karina are joined by three DMD caregivers, a mother, a father, and an aunt, to explore their perspective and experience providing care.
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2 years ago
54 minutes 48 seconds

Insightful Moments: My VIBE
Perspective from a Duchenne Mom and Healthcare (Spanish Episode)
Aurora Flores is joined by DMD mother and Psychotherapist, Fabiola, to share her perspective as a mom and therapist in the DMD community.
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2 years ago
18 minutes 28 seconds

Insightful Moments: My VIBE
Navigating Independence with PKU with Maridith, Lauren, and Abigaill
Paula Orandash speaks with Maridith, Lauren, and Abigaill about how they navigate their Independence while living with PKU.
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2 years ago
58 minutes 48 seconds

Insightful Moments: My VIBE
Living with PKU, with Linda and Kendall
Paula Orandash speaks with Linda and Kendall to learn more about their experiences living with PKU and searching for normalcy.
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2 years ago
34 minutes 55 seconds

Insightful Moments: My VIBE
Advocating within the PKU Community
Paula Orandash speaks with two guests named Samantha about advocating within the PKU community.
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2 years ago
34 minutes 36 seconds

Insightful Moments: My VIBE
Independence and Assistance with Ben and Ryan
Host Paula Orandash speaks with Ben and Ryan, who have Duchenne Muscular Dystrophy, about how they receive assistance and maintain their independence.
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3 years ago
29 minutes 53 seconds

Insightful Moments: My VIBE
Sibling Support
3 years ago
40 minutes

Insightful Moments: My VIBE
Finding Out You Have a Rare Disease
It’s day 1 of the 28th annual PPMD conference and Paula Orandash speaks to families about their experiences in the rare disease community.
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3 years ago
1 hour 16 minutes 20 seconds

Insightful Moments: My VIBE
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 remind listeners that we’re all in this together.
Show more...
3 years ago
58 seconds

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.