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

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 a... Read more

Ranked #1

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

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

Rare Genomics Institute RareShare Ask the Expert:Podcast Series, Disease Specific Q&A Sessions, For feedbacks contac... Read more

12 Sep 2016

22mins

Ranked #2

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

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

Rare Genomics Institute RareShare Ask the Expert:Podcast Series, Disease Specific Q&A Sessions, For feedbacks contac... Read more

13 Apr 2015

57mins

Ranked #3

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

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

Rare Genomics Institute RareShare Ask the Expert:Podcast Series, Disease Specific Q&A Sessions, For feedbacks contac... Read more

13 Apr 2015

48mins

Ranked #4

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

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

Rare Genomics Institute RareShare Ask the Expert:Podcast Series, Disease Specific Q&A Sessions, For feedbacks contac... Read more

13 Aug 2015

56mins

Most Popular Podcasts

Ranked #5

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

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

Rare Genomics Institute RareShare Ask the Expert:Podcast Series, Disease Specific Q&A Sessions, For feedbacks contac... Read more

6 Mar 2018

26mins

Ranked #6

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

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

Rare Genomics Institute RareShare Ask the Expert:Podcast Series, Disease Specific Q&A Sessions, For feedbacks contac... Read more

14 May 2018

24mins

Ranked #7

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

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

Rare Genomics Institute RareShare Ask the Expert:Podcast Series, Disease Specific Q&A Sessions, For feedbacks contac... Read more

20 Nov 2017

54mins

Ranked #8

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

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

Anne Bruns’ son Ethan was diagnosed with Atypical Hemolytic Uremic syndrome (Atypical HUS), when he was just 8 years old... Read more

14 Aug 2018

33mins

Ranked #9

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

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

Being born with, and growing up with a rare disease means you don’t necessarily know any other way of life. This month w... Read more

17 Dec 2018

33mins

Ranked #10

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

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

Rare Genomics Institute RareShare Ask the Expert:Podcast Series, Disease Specific Q&A Sessions, For feedbacks contac... Read more

29 May 2016

1hr 8mins

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