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
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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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Seth Rotberg, 27, was diagnosed with Huntington’s Disease at age 20 and has since become an advocate for rare disease patients. He tells us about his experience dealing with his own diagnosis, and shares his advice for anyone dealing with a new disease diagnosis, especially young people.

Listen   24:13
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.
Listen   26:07

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

November 20, 2017

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)

Listen   54:40

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


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