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Rare Genomics / RareShare Podcast Series: Ask the Expert & Patient Navigation

Rare Genomics Institute

We talk to rare disease experts about treatments, trials, and new developments, and rare disease patients share their experiences and advice for staying positive in the face of diagnosis. Le...

Rare Genomics / RareShare Podcast Series: Ask the Expert & Patient Navigation Podcast Guide

Listen to Rare Genomics / RareShare Podcast Series: Ask the Expert & Patient Navigation, a Health podcast by Rare Genomics Institute. Stream 29 episodes in English, follow new audio stories, and play episodes online on Radio and Podcast.

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Episodes

20 of 29 episodes

Genetic Counseling in Rare Diseases

Two genetic counselors, Sasha Bauer and Chloe Cheung, discuss how genetic counseling can help rare disease patients understand and cope with...

49:43Feb 24, 2024

Jimmy Lin RareShare Podcast

Rare Genomics Institute founder and president, Dr. Jimmy LIn, discusses health equity and rare diseases in this episode of the RareShare pod...

36:34Aug 8, 2023

Clinic for Special Children

Serving the Amish and Mennonite communities in Central Pennsylvania, the Clinic for Special Children provides counseling and healthcare for...

01:00:46Feb 7, 2022

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 this episode, Gerald...

45:41May 26, 2021

Meet the Rareshare Team

This episode features RareShare itself, and discuss various topics ranging from its goals and how to utilize its networking and informationa...

29:10Dec 7, 2020

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 spending too much time...

34:55Jan 22, 2020

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 patients and caregiv...

17:25Aug 27, 2019

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 Carns, his wife and...

46:55Jun 8, 2019

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 institute runs a progr...

29:00Apr 19, 2019

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 we spoke with 23-year...

33:15Dec 17, 2018

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. Anne tells us how...

33:22Aug 14, 2018