May 26, 2021
Ethan and Me with Geraldine Renton
45 minutes
Podcast · Inglés
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. Learn more about the RareShare.org community, and how you can get involved. Get in touch if you are an expert or patient who would like to be on the podcast! Email us at rgpodcast@raregenomics.org
Episodes
Ordered by publication date.
Dec 7, 2020
Meet the Rareshare Team
29 minutes
Jan 21, 2020
Don’t Sell Yourself Short: Having a Career after a Rare Disease Diagnosis
34 minutes
Aug 27, 2019
How to Get Answers From Rare Disease Experts: The Rare Genomics Task Force (RGTF)
17 minutes
Jun 8, 2019
3 Perspectives on Facing a Rare Disease: A Patient, a Caregiver, and an Expert Discuss Diagnosis and Treatment of Pulmonary Fibrosis
46 minutes
Apr 19, 2019
All About Genomic Sequencing for Rare Disease Patients: A Focus on iHope
29 minutes
Dec 17, 2018
Growing up With a Rare Disease: An Alagille Syndrome Warrior on Understanding Her Rare Disease and Participating in Research
33 minutes
Aug 13, 2018
Coping With Your Child's Diagnosis: The Mother of a Rare Disease Patient on How She Found a Supportive Community
33 minutes
May 13, 2018
Receiving a Rare Disease Diagnosis: A Huntington’s Disease Patient Shares His Experience and Advice for Coping with a New Diagnosis (Patient Navigation)
24 minutes
Mar 5, 2018
The Power of Community: How Patient Communities Provide Hope and Help Further Rare Disease Research (Patient Navigation)
26 minutes
Nov 19, 2017
Antisynthetase Syndrome Ask the Experts Podcast Series, Session II - 11/20/2017
54 minutes
Jun 14, 2017
Adrenomyeloneuropathy (AMN)/Adrenoleukodystrophy (ALD) Podcast Series, Session II (06/14/2017)
Nov 17, 2016
LGLL Ask The Experts Podcast Session IV
48 minutes
Sep 11, 2016
Hospitals, Doctors, Medical Teams: Navigating Barriers of Rare Diseases (Patient Navigation)
22 minutes
May 28, 2016
Crigler Najjar Syndrome Ask The Experts Podcast Series (05/25/2016)
1 hour 8 minutes
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