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.
Publisher
PTC Therapeutics
Category
health & fitness · kids & family · society & culture
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.
5 Dec 2023
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.
5 Dec 2023
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.
5 Dec 2023
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.
5 Sept 2023
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.
5 Sept 2023
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.
26 Apr 2023
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.
29 Mar 2023
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.
1 Mar 2023
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.
19 Dec 2022
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.
19 Dec 2022
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.
13 Dec 2022
Advocating within the PKU Community
Paula Orandash speaks with two guests named Samantha about advocating within the PKU community.
5 Dec 2022
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.
3 Nov 2022
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.
29 Sept 2022
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 talk with individuals and families affected by DMD, specifically we are speaking with siblings of those diagnosed with DMD to hear their experiences processing a spectrum of emotions and learning to lean on other members of the sibling community. Join us for another wonderful episode of Insightful Moments: My VIBE, brought to you by PTC Therapeutics.
For more information, visit the Insightful Moments website at www.PTCinsightfulmoments.com (http://www.ptcinsightfulmoments.com).
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Presented by PTC Therapeutics
www.ptcbio.com
6 Sept 2022
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.
29 Aug 2022
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.
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Apple Podcasts (US)
5.0 / 5
5 ratings
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