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

Updated 5 months ago

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Medicine
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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 rgpodcast@raregenomics.org

Read more

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 rgpodcast@raregenomics.org

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

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

Updated 5 months ago

Read more

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 rgpodcast@raregenomics.org

Rank #1: Hospitals, Doctors, Medical Teams: Navigating Barriers of Rare Diseases (Patient Navigation)

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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)

Sep 12 2016
22 mins
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Rank #2: Crigler Najjar Syndrome Ask The Experts Podcast Series (05/25/2016)

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

May 29 2016
1 hour 8 mins
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Rank #3: LGLL Podcast Series III (3/25/2016)

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

Mar 29 2016
1 hour 2 mins
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Rank #4: LGLL Podcast Session II (11/24/2015)

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

Nov 24 2015
1 hour
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Rank #5: Chromosome 4q Deletion Syndrome Podcast Series: (08/10/2015)

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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)

Aug 13 2015
56 mins
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Rank #6: Adrenomyeloneuropathy (AMN)/Adrenoleukodystrophy (ALD) Podcast Series-06/02/2015

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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) 

Jun 03 2015
1 hour 13 mins
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Rank #7: Syndrome Without A Name, Ask the Expert Podcast Series-06/28/2012

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

Apr 17 2015
1 hour
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Rank #8: Ataxia Podcast Series-II (Bonus Segment)-10/11/2012

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

Apr 13 2015
21 mins
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Rank #9: C.elegans (Nematode worms) as a Research Model in Rare Diseases & Trigeminal Neuralgia (TN) Podcast Series-12/12/2012

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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

Apr 13 2015
57 mins
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Rank #10: Mendelian Rare Diseases and Technological Advances in Sequencing, Ataxia Podcast Series-I-10/8/2012

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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

Apr 13 2015
57 mins
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