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Podcasts

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

Date: 03/06/2018

We look at the importance of patient communities for providing support to one another, and for helping further rare disease research. Austin Letcher, the senior research associate for the Coordination of Rare Diseases at Sanford Health (CoRDS) tells us how a free database provides information for both patients and researchers.

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

Date: 11/24/2017

Associated community: Antisynthetase Syndrome

Featuring Dr Sonye Danoff (Johns Hopkins Interstitial Lung Disease Clinic) and Dr Frederick Miller (National Institute of Environmental Health Sciences at the NIH Clinical Center) answering community questions about Antisynthetase Syndrome (ASS) including the latest clinical and research developments and treatment options. Hosted by Imogen Crispe and Deepa Kushwaha (Music credit: www.bensound.com)

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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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