Rare Genomics / RareShare Podcast Series: Ask the Expert & Patient Navigation
BookmarkRare Genomics Institute
Rare Genomics / RareShare Podcast Series: Ask the Expert & Patient Navigation is a health podcast hosted by Rare Genomics Institute. It has 29 episodes, with the latest published February 2024.
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]
health ·en ·29 episodes
Genetic Counseling in Rare Diseases
Jimmy Lin RareShare Podcast
Clinic for Special Children
Ethan and Me with Geraldine Renton
Meet the Rareshare Team
Don't Sell Yourself Short: Having a Career after a Rare Disease Diagnosis
How to Get Answers From Rare Disease Experts: The Rare Genomics Task Force (RGTF)
3 Perspectives on Facing a Rare Disease: A Patient, a Caregiver, and an Expert Discuss Diagnosis and Treatment of Pulmonary Fibrosis
All About Genomic Sequencing for Rare Disease Patients: A Focus on iHope
Growing up With a Rare Disease: An Alagille Syndrome Warrior on Understanding Her Rare Disease and Participating in Research
Coping With Your Child's Diagnosis: The Mother of a Rare Disease Patient on How She Found a Supportive Community
Receiving a Rare Disease Diagnosis: A Huntington's Disease Patient Shares His Experience and Advice for Coping with a New Diagnosis (Patient Navigation)
The Power of Community: How Patient Communities Provide Hope and Help Further Rare Disease Research (Patient Navigation)
Antisynthetase Syndrome Ask the Experts Podcast Series, Session II - 11/20/2017
LGLL Ask The Experts Podcast Session IV
Hospitals, Doctors, Medical Teams: Navigating Barriers of Rare Diseases (Patient Navigation)
Crigler Najjar Syndrome Ask The Experts Podcast Series (05/25/2016)
LGLL Podcast Series III (3/25/2016)
LGLL Podcast Session II (11/24/2015)
Chromosome 4q Deletion Syndrome Podcast Series: (08/10/2015)
Adrenomyeloneuropathy (AMN)/Adrenoleukodystrophy (ALD) Podcast Series-06/02/2015
Mice as Research Models in Rare Neuro-immunologic Diseases (Transverse Myelitis, Neuromyelitis Optica, Acute Disseminated Encephalomyelitis and Optic Neuritis)-8/13/2013
Ataxia Podcast Series-II (Bonus Segment)-10/11/2012
Mendelian Rare Diseases and Technological Advances in Sequencing, Ataxia Podcast Series-I-10/8/2012
C.elegans (Nematode worms) as a Research Model in Rare Diseases & Trigeminal Neuralgia (TN) Podcast Series-12/12/2012
Antisynthetase Syndrome Podcast Series-02/24/2015
LGLL Podcast Series-02/13/15
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