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Podcasts

Adrenomyeloneuropathy (AMN)/Adrenoleukodystrophy (ALD) Podcast Series, Session II (06/14/2017)

Date: 06/14/2017

Associated community: Adrenomyeloneuropathy

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)

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LGLL Ask The Experts Podcast Session IV

Date: 11/18/2016

Associated community: Large Granular Lymphocytic Leukemia

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

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

Date: 09/12/2016

Associated community: Systemic Capillary Leak Syndrome

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)

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

Date: 05/25/2016

Associated community: Crigler-Najjar Syndrome

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

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LGLL Podcast Series III (3/25/2016)

Date: 03/25/2016

Associated community: Large Granular Lymphocytic Leukemia

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

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LGLL Podcast Session II (11/24/2015)

Date: 11/11/2015

Associated community: Large Granular Lymphocytic Leukemia

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

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

Date: 08/10/2015

Associated community: Chromosome 4q Deletion Syndrome

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)

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

Date: 06/02/2015

Associated community: Adrenomyeloneuropathy

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)

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Antisynthetase Syndrome Podcast Series-02/24/2015

Date: 02/24/2015

Associated community: Antisynthetase Syndrome

Featuring Dr Fredrick Miller (NIEHS, NIH), Dr Lisa Christopher-Stine (John Hopkins School of Medicine) and Dr Jimmy Lin (RGI/RareShare)

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LGLL Podcast Series-02/13/15

Date: 02/13/2015

Associated community: Large Granular Lymphocytic Leukemia

Featuring Dr Thomas Loughran (UVA), Dr Thierry Lamy (Rennes University, France) and Dr Jimmy Lin (RGI/RareShare)

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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

Date: 08/13/2013

Featuring Dr Benjamin Greenberg (UT Southwestern Medical Center), Dr Allen Desena (University of Texas Southwestern in Dallas), Dr Cathleen Lutz ( The Jackson Laboratory) & Dr Jimmy Lin (RGI/RareShare) in association with The Transverse Myelitis Association (TMA)

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

Date: 12/12/2012

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

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

Date: 10/11/2012

Associated community: Ataxia Telangiectasia

Featuring Dr Susan Perelman (David Geffen School of Medicine at UCLA) & Dr Jimmy Lin (RGI/RareShare) in association with Ben's Friends

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

Date: 10/08/2012

Associated community: Mendelian susceptibility to atypical mycobacteria

Featuring Dr Misha Angrist (Duke University), Dr Lyon Gholson (Cold Spring Harbor Laboratory), Dr Susan Perelman (David Geffen School of Medicine at UCLA) & Dr Jimmy Lin (RGI/RareShare) in association with Ben's Friends

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

Date: 06/28/2012

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

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