Clinic for Special Children
Clinic for Special Children
Serving the Amish and Mennonite communities in Central Pennsylvania, the Clinic for Special Children provides counseling... Read more
7 Feb 2022
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1hr
Ethan and Me with Geraldine Renton
Ethan and Me with Geraldine Renton
Listen to RareShare's latest podcast with Geraldine Renton, book author and Irish mother of a Hunter Syndrome child. In ... Read more
26 May 2021
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45mins
Meet the Rareshare Team
Meet the Rareshare Team
This episode features RareShare itself, and discuss various topics ranging from its goals and how to utilize its network... Read more
7 Dec 2020
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29mins
Don’t Sell Yourself Short: Having a Career after a Rare Disease Diagnosis
Don’t Sell Yourself Short: Having a Career after a Rare Disease Diagnosis
No one expects to get a rare disease diagnosis in their mid 20s at the start of a budding career, then get fired for spe... Read more
22 Jan 2020
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34mins
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How to Get Answers From Rare Disease Experts: The Rare Genomics Task Force (RGTF)
How to Get Answers From Rare Disease Experts: The Rare Genomics Task Force (RGTF)
Arvin Gouw, a scientist at Stanford University and a founding member of Rare Genomics Insitute, chats with us about how ... Read more
27 Aug 2019
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17mins
3 Perspectives on Facing a Rare Disease: A Patient, a Caregiver, and an Expert Discuss Diagnosis and Treatment of Pulmonary Fibrosis
3 Perspectives on Facing a Rare Disease: A Patient, a Caregiver, and an Expert Discuss Diagnosis and Treatment of Pulmonary Fibrosis
Hear about rare disease diagnosis, treatment, and quality of life from the perspective of Pulmonary Fibrosis patient Jim... Read more
8 Jun 2019
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46mins
All About Genomic Sequencing for Rare Disease Patients: A Focus on iHope
All About Genomic Sequencing for Rare Disease Patients: A Focus on iHope
Genomic sequencing is something many rare disease patients may need, but may not be able to access. The Rare Genomics in... Read more
19 Apr 2019
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29mins
Growing up With a Rare Disease: An Alagille Syndrome Warrior on Understanding Her Rare Disease and Participating in Research
Growing up With a Rare Disease: An Alagille Syndrome Warrior on Understanding Her Rare Disease and Participating in Research
Being born with, and growing up with a rare disease means you don’t necessarily know any other way of life. This month w... Read more
17 Dec 2018
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33mins
Coping With Your Child's Diagnosis: The Mother of a Rare Disease Patient on How She Found a Supportive Community
Coping With Your Child's Diagnosis: The Mother of a Rare Disease Patient on How She Found a Supportive Community
Anne Bruns’ son Ethan was diagnosed with Atypical Hemolytic Uremic syndrome (Atypical HUS), when he was just 8 years old... Read more
14 Aug 2018
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33mins
Receiving a Rare Disease Diagnosis: A Huntington’s Disease Patient Shares His Experience and Advice for Coping with a New Diagnosis (Patient Navigation)
Receiving a Rare Disease Diagnosis: A Huntington’s Disease Patient Shares His Experience and Advice for Coping with a New Diagnosis (Patient Navigation)
Rare Genomics Institute RareShare Ask the Expert:Podcast Series, Disease Specific Q&A Sessions, For feedbacks contac... Read more
14 May 2018
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24mins
