Rare Genomics/RareShare Podcast Series: Ask the Expert & Patient Navigation (Deepask1)

Rare Genomics/RareShare Podcast Series: Ask the Expert & Patient Navigation (Deepask1)
  • http://www.raregenomics.org, www.rareshare.org

Rare Genomics Institute RareShare Ask the Expert:Podcast Series, Disease Specific Q&A Sessions, For feedbacks contact, Scientific Director, Rare Genomics Institute: Deepa Kushwaha, [email protected] (Music credit: www.bensound.com)

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Featuring Dr. Paul Orchard (University of Minnesota) and Dr. William Rizzo (University of Nebraska) answering community questions about Adrenomyeloneuropathy (AMN). Hosted by Imogen Crispe & Deepa Kushwaha. (Music credit:www.bensound.com)

Listen   58:34

LGLL Ask The Experts Podcast Session IV

November 18, 2016

Featuring Dr. Thomas Loughran (UVA, Virginia) answering community questions about Large Granular Lymphocytic Leukemia (Music credit:www.bensound.com)

Listen   48:39

Arturo Porzecanski, a rare disease patient and advocate, gives us some tips on navigating decisions involved in choosing hospitals, doctors, and medical teams.

Featuring Arturo Porzecanski (American University). (Music credit:www.bensound.com)

Listen   0:00

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

May 29, 2016

Featuring Dr. P.J. Bosma (AMC), Dr Hendrik J. Vreman (Stanford), and Dr Jayanta Roy-Chowdhury (AECM). (Music credit:www.bensound.com)

Listen   68:27

LGLL Podcast Series III (3/25/2016)

March 29, 2016

Featuring Dr. Thomas Loughran (UVA, Virginia) and Dr. Bogdan Dumitriu (NIH, Bethesda, Maryland).

Listen   62:12

LGLL Podcast Session II (11/24/2015)

November 24, 2015

Featuring Dr Thomas Loughran (UVA, Virginia), Dr Lubomir Sokol (Moffitt Cancer Center, Florida)  and Dr Jimmy Lin (RG/RareShare)

Listen   60:47

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

August 13, 2015

Featuring Dr Scott Hickey (Nationwide Childrens Hospital, Columbus, OH), Dr Eugene Strehle (North Tyneside General Hospital & Newcastle University, North Shields, UK), Ms Prisca Middlemiss  (Unique, The Rare Chromo Disorder Group, Oxted, Surrey, UK) and Dr Jimmy Lin (RGI)

Listen   56:42

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

June 03, 2015

Featuring Dr Weston Miller (Univertsity of Minnesota), Dr Jay R Shapiro (Kennedy Kreiger Institute, John Hopkins University), Ms Ann Moser  (Kennedy Kreiger Institute, John Hopkins University) and Dr Jimmy Lin (RGI) 

Listen   73:07

Syndrome Without A Name, Ask the Expert Podcast Series-06/28/2012

April 17, 2015

Featuring Dr Jimmy Lin (RGI), Dr Marisa Dolled-Filhart (RGI) and Dr Naira Rezende (RGI) in association with Amy Clugston, SWAN USA

Listen   60:39

Featuring for C. elegans segment - Dr Andy Golden (NIDKD, NIH) & Dr Michael Stern (University of Central Florida) & for Trigeminal Neuralgia (TN) segment - Dr William P Cheshire (Mayo Clinic, Florida) & Dr Richard A. Lawhern (Living with TN) along with hosting Dr Jimmy Lin (RGI/RareShare) in association with Ben's Friends

Listen   57:29

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