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

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

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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

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Title
1

Genetic Counseling in Rare Diseases

2

Jimmy Lin RareShare Podcast

3

Clinic for Special Children

4

Ethan and Me with Geraldine Renton

5

Meet the Rareshare Team

6

Don't Sell Yourself Short: Having a Career after a Rare Disease Diagnosis

7

How to Get Answers From Rare Disease Experts: The Rare Genomics Task Force (RGTF)

8

3 Perspectives on Facing a Rare Disease: A Patient, a Caregiver, and an Expert Discuss Diagnosis and Treatment of Pulmonary Fibrosis

9

All About Genomic Sequencing for Rare Disease Patients: A Focus on iHope

10

Growing up With a Rare Disease: An Alagille Syndrome Warrior on Understanding Her Rare Disease and Participating in Research

11

Coping With Your Child's Diagnosis: The Mother of a Rare Disease Patient on How She Found a Supportive Community

12

Receiving a Rare Disease Diagnosis: A Huntington's Disease Patient Shares His Experience and Advice for Coping with a New Diagnosis (Patient Navigation)

13

The Power of Community: How Patient Communities Provide Hope and Help Further Rare Disease Research (Patient Navigation)

14

Antisynthetase Syndrome Ask the Experts Podcast Series, Session II - 11/20/2017

15

LGLL Ask The Experts Podcast Session IV

16

Hospitals, Doctors, Medical Teams: Navigating Barriers of Rare Diseases (Patient Navigation)

17

Crigler Najjar Syndrome Ask The Experts Podcast Series (05/25/2016)

18

LGLL Podcast Series III (3/25/2016)

19

LGLL Podcast Session II (11/24/2015)

20

Chromosome 4q Deletion Syndrome Podcast Series: (08/10/2015)

21

Adrenomyeloneuropathy (AMN)/Adrenoleukodystrophy (ALD) Podcast Series-06/02/2015

22

Mice as Research Models in Rare Neuro-immunologic Diseases (Transverse Myelitis, Neuromyelitis Optica, Acute Disseminated Encephalomyelitis and Optic Neuritis)-8/13/2013

23

Ataxia Podcast Series-II (Bonus Segment)-10/11/2012

24

Mendelian Rare Diseases and Technological Advances in Sequencing, Ataxia Podcast Series-I-10/8/2012

25

C.elegans (Nematode worms) as a Research Model in Rare Diseases & Trigeminal Neuralgia (TN) Podcast Series-12/12/2012

26

Antisynthetase Syndrome Podcast Series-02/24/2015

27

LGLL Podcast Series-02/13/15

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