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

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]

info_outline Genetic Counseling in Rare Diseases 02/24/2024
info_outline Jimmy Lin RareShare Podcast 08/08/2023
info_outline Clinic for Special Children 02/07/2022
info_outline Ethan and Me with Geraldine Renton 05/26/2021
info_outline Meet the Rareshare Team 12/07/2020
info_outline Don’t Sell Yourself Short: Having a Career after a Rare Disease Diagnosis 01/22/2020
info_outline How to Get Answers From Rare Disease Experts: The Rare Genomics Task Force (RGTF) 08/27/2019
info_outline 3 Perspectives on Facing a Rare Disease: A Patient, a Caregiver, and an Expert Discuss Diagnosis and Treatment of Pulmonary Fibrosis 06/08/2019
info_outline All About Genomic Sequencing for Rare Disease Patients: A Focus on iHope 04/19/2019
info_outline Growing up With a Rare Disease: An Alagille Syndrome Warrior on Understanding Her Rare Disease and Participating in Research 12/17/2018
info_outline Coping With Your Child's Diagnosis: The Mother of a Rare Disease Patient on How She Found a Supportive Community 08/14/2018
info_outline Receiving a Rare Disease Diagnosis: A Huntington’s Disease Patient Shares His Experience and Advice for Coping with a New Diagnosis (Patient Navigation) 05/14/2018
info_outline The Power of Community: How Patient Communities Provide Hope and Help Further Rare Disease Research (Patient Navigation) 03/06/2018
info_outline Antisynthetase Syndrome Ask the Experts Podcast Series, Session II - 11/20/2017 11/20/2017
info_outline Adrenomyeloneuropathy (AMN)/Adrenoleukodystrophy (ALD) Podcast Series, Session II (06/14/2017) 06/15/2017
info_outline LGLL Ask The Experts Podcast Session IV 11/18/2016
info_outline Hospitals, Doctors, Medical Teams: Navigating Barriers of Rare Diseases (Patient Navigation) 09/12/2016
info_outline Crigler Najjar Syndrome Ask The Experts Podcast Series (05/25/2016) 05/29/2016
info_outline LGLL Podcast Series III (3/25/2016) 03/29/2016
info_outline LGLL Podcast Session II (11/24/2015) 11/24/2015
info_outline Chromosome 4q Deletion Syndrome Podcast Series: (08/10/2015) 08/13/2015
info_outline Adrenomyeloneuropathy (AMN)/Adrenoleukodystrophy (ALD) Podcast Series-06/02/2015 06/03/2015
info_outline Syndrome Without A Name, Ask the Expert Podcast Series-06/28/2012 04/17/2015
info_outline Mice as Research Models in Rare Neuro-immunologic Diseases (Transverse Myelitis, Neuromyelitis Optica, Acute Disseminated Encephalomyelitis and Optic Neuritis)-8/13/2013 04/13/2015
info_outline Ataxia Podcast Series-II (Bonus Segment)-10/11/2012 04/13/2015
info_outline Mendelian Rare Diseases and Technological Advances in Sequencing, Ataxia Podcast Series-I-10/8/2012 04/13/2015
info_outline C.elegans (Nematode worms) as a Research Model in Rare Diseases & Trigeminal Neuralgia (TN) Podcast Series-12/12/2012 04/13/2015
info_outline Antisynthetase Syndrome Podcast Series-02/24/2015 02/25/2015
info_outline LGLL Podcast Series-02/13/15 02/13/2015