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

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

Por: 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 [email protected]
29 episodios disponibles

Latest episodes of the podcast Rare Genomics / RareShare Podcast Series: Ask the Expert & Patient Navigation

Genetic Counseling in Rare Diseases 24/02/2024
Jimmy Lin RareShare Podcast 08/08/2023
Clinic for Special Children 07/02/2022
Ethan and Me with Geraldine Renton 26/05/2021
Meet the Rareshare Team 07/12/2020
Don’t Sell Yourself Short: Having a Career after a Rare Disease Diagnosis 22/01/2020
How to Get Answers From Rare Disease Experts: The Rare Genomics Task Force (RGTF) 27/08/2019
3 Perspectives on Facing a Rare Disease: A Patient, a Caregiver, and an Expert Discuss Diagnosis and Treatment of Pulmonary Fibrosis 08/06/2019
All About Genomic Sequencing for Rare Disease Patients: A Focus on iHope 19/04/2019
Growing up With a Rare Disease: An Alagille Syndrome Warrior on Understanding Her Rare Disease and Participating in Research 17/12/2018
Coping With Your Child's Diagnosis: The Mother of a Rare Disease Patient on How She Found a Supportive Community 14/08/2018
Receiving a Rare Disease Diagnosis: A Huntington’s Disease Patient Shares His Experience and Advice for Coping with a New Diagnosis (Patient Navigation) 14/05/2018
The Power of Community: How Patient Communities Provide Hope and Help Further Rare Disease Research (Patient Navigation) 06/03/2018
Antisynthetase Syndrome Ask the Experts Podcast Series, Session II - 11/20/2017 20/11/2017
Adrenomyeloneuropathy (AMN)/Adrenoleukodystrophy (ALD) Podcast Series, Session II (06/14/2017) 15/06/2017
LGLL Ask The Experts Podcast Session IV 18/11/2016
Hospitals, Doctors, Medical Teams: Navigating Barriers of Rare Diseases (Patient Navigation) 12/09/2016
Crigler Najjar Syndrome Ask The Experts Podcast Series (05/25/2016) 29/05/2016
LGLL Podcast Series III (3/25/2016) 29/03/2016
LGLL Podcast Session II (11/24/2015) 24/11/2015
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