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LIBROS RECOMENDADOS

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Once Upon A Gene Podcast

 

Once Upon a Gene is a podcast that explores the world of raising children with disabilities and rare genetic disorders. Host, Effie Parks shares her own personal story of raising a child with CTNNB1 syndrome, while trying to find the non-existent rule book of bringing up such a special kid. This podcast features interviews with fellow parents, therapists, doctors and anyone else who wants to share their story.

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The Health Design Podcast

 

The Health Design Podcast brought to you by the Journal of Health Design(www.journalofhealthdesign.com). Features interviews with the world's leading health design experts including clinicians, designers, patients, authors and researchers. Better health by design.

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Parenting: Impossible – The Special Needs Survival Podcast

 

Parenting: Impossible – The Special Needs Survival Podcast is a podcast dedicated to giving compassionate advice for all stages of life. Our conversations revolve around the entire special needs community including those with autism, intellectual disabilities, physical disabilities, mental health issues and more.

 

Parents and experts (and sometimes parents who are experts!) discuss a whole host of issues facing the special needs community including raising children with different abilities, transitioning into adulthood, sibling challenges and how to effectively navigate the complex systems in our world.

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Bump In The Road Podcast

Everyone hits a bump in the road. What do you do with it? Be inspired as we explore the ways people experience, navigate and manage the ups and downs and twists and turns in this road trip called life.

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Energy in action by MitoAction

Energy In Action by MitoAction will consist of conversations with patients, families, researchers and thought leaders in the mitochondrial disease communities. These podcasts will give you a glimpse into the lives of families affected by mitochondrial disease and the latest in clinical trials, diagnosis, research and the advancement of therapies.

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RareCast - the Global Genes podcast

RARECast is a Global Genes podcast hosted by award-winning journalist Daniel Levine. It focuses on the intersection of rare disease with business, science, and policy.

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JIMD - Journal of Inherited Metabolic Disease Podcast

A fortnightly podcast from the Journal of Inherited Metabolic Disease, where authors discuss recent publications from the journal. The podcast is intended for specialists and interested clinicians but is also intended to increase the accessibility of this work for patients and families. Supported by Wiley.

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WAIT, HOW DO YOU SPELL THAT? is a rare disease podcast produced by Patient Worthy.

We talk about issues affecting people rare and underdiagnosed conditions and interview advocates from across the community. We’re definitely not doctors, and we can’t give you medical advice. We’re just here to chat and laugh and learn about issues that impact people living with diseases our doctors can’t to spell.

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Parents As Rare. Hosted by Adam Johnson.

I am Adam Johnson, a dad and rare disease patient advocate, a self-proclaimed Dadvocate. From the onset of symptoms and after the diagnosis of a progressive mitochondrial disease with no treatment or cures, the isolation was almost as excruciating as the symptoms. I felt alone in so many ways, but in particular as a parent. I knew I couldn’t be the only person with a rare disease who was trying to raise children, but it felt like I was. Without the community I was seeking, I decided to build it myself. Living life as a parent with a rare disease can be paradoxical. We laugh and cry, we’re vulnerable and scared, we’re brave and afraid- all at the same time. Parents As Rare, a series brought to you by the Energy In Action podcast, is a community where parents who have a rare disease or chronic illness can connect, share, support and be supported.