Shows
Rare Genomics / RareShare Podcast Series: Ask the Expert & Patient NavigationDon’t Sell Yourself Short: Having a Career after a Rare Disease DiagnosisNo one expects to get a rare disease diagnosis in their mid 20s at the start of a budding career, then get fired for spending too much time away getting treatment, but that’s exactly what happened to Candace Lerman in 2014. Now, almost 6 years later, inspired by her own quest for effective treatment, Candace has retrained as a lawyer and is fighting for new treatment approvals on Capitol Hill. Candace joins us to chat about her experience as a rare disease patient, how she went from losing her job, to succeeding at law school, and about the work she is...2020-01-2234 min
Rare Genomics / RareShare Podcast Series: Ask the Expert & Patient NavigationCoping With Your Child's Diagnosis: The Mother of a Rare Disease Patient on How She Found a Supportive CommunityAnne Bruns’ son Ethan was diagnosed with Atypical Hemolytic Uremic syndrome (Atypical HUS), when he was just 8 years old. Anne tells us how she, Ethan and the rest of their family first reacted to the diagnosis, shares her advice for other families coping with a rare disease diagnosis, and lets us know how Ethan is doing today. www.rareshare.org2018-08-1433 min
Rare Genomics / RareShare Podcast Series: Ask the Expert & Patient NavigationRare Genomics/RareShare Podcast Series: Ask the Expert & Patient Navigation (Deepask1)Rare Genomics Institute RareShare Ask the Expert:Podcast Series, Disease Specific Q&A Sessions, For feedbacks contact, Scientific Director, Rare Genomics Institute: Deepa Kushwaha, deepa.kushwaha@raregenomics.org (Music credit: www.bensound.com)2018-05-1424 minRare Genomics / RareShare Podcast Series: Ask the Expert & Patient NavigationRare Genomics/RareShare Podcast Series: Ask the Expert & Patient Navigation (Deepask1)Rare Genomics Institute RareShare Ask the Expert:Podcast Series, Disease Specific Q&A Sessions, For feedbacks contact, Scientific Director, Rare Genomics Institute: Deepa Kushwaha, deepa.kushwaha@raregenomics.org (Music credit: www.bensound.com)2018-03-0626 minRare Genomics / RareShare Podcast Series: Ask the Expert & Patient NavigationRare Genomics/RareShare Podcast Series: Ask the Expert & Patient Navigation (Deepask1)Rare Genomics Institute RareShare Ask the Expert:Podcast Series, Disease Specific Q&A Sessions, For feedbacks contact, Scientific Director, Rare Genomics Institute: Deepa Kushwaha, deepa.kushwaha@raregenomics.org (Music credit: www.bensound.com)2017-11-2054 minRare Genomics / RareShare Podcast Series: Ask the Expert & Patient NavigationRare Genomics/RareShare Podcast Series: Ask the Expert & Patient Navigation (Deepask1)Rare Genomics Institute RareShare Ask the Expert:Podcast Series, Disease Specific Q&A Sessions, For feedbacks contact, Scientific Director, Rare Genomics Institute: Deepa Kushwaha, deepa.kushwaha@raregenomics.org (Music credit: www.bensound.com)2017-06-1500 minRare Genomics / RareShare Podcast Series: Ask the Expert & Patient NavigationRare Genomics/RareShare Podcast Series: Ask the Expert & Patient Navigation (Deepask1)Rare Genomics Institute RareShare Ask the Expert:Podcast Series, Disease Specific Q&A Sessions, For feedbacks contact, Scientific Director, Rare Genomics Institute: Deepa Kushwaha, deepa.kushwaha@raregenomics.org (Music credit: www.bensound.com)2016-11-1848 minRare Genomics / RareShare Podcast Series: Ask the Expert & Patient NavigationRare Genomics/RareShare Podcast Series: Ask the Expert & Patient Navigation (Deepask1)Rare Genomics Institute RareShare Ask the Expert:Podcast Series, Disease Specific Q&A Sessions, For feedbacks contact, Scientific Director, Rare Genomics Institute: Deepa Kushwaha, deepa.kushwaha@raregenomics.org (Music credit: www.bensound.com)2016-09-1222 minRare Genomics / RareShare Podcast Series: Ask the Expert & Patient NavigationRare Genomics/RareShare Podcast Series: Ask the Expert & Patient Navigation (Deepask1)Rare Genomics Institute RareShare Ask the Expert:Podcast Series, Disease Specific Q&A Sessions, For feedbacks contact, Scientific Director, Rare Genomics Institute: Deepa Kushwaha, deepa.kushwaha@raregenomics.org (Music credit: www.bensound.com)2016-05-291h 08Rare Genomics / RareShare Podcast Series: Ask the Expert & Patient NavigationRare Genomics/RareShare Podcast Series: Ask the Expert & Patient Navigation (Deepask1)Rare Genomics Institute RareShare Ask the Expert:Podcast Series, Disease Specific Q&A Sessions, For feedbacks contact, Scientific Director, Rare Genomics Institute: Deepa Kushwaha, deepa.kushwaha@raregenomics.org (Music credit: www.bensound.com)2016-03-291h 02Rare Genomics / RareShare Podcast Series: Ask the Expert & Patient NavigationRare Genomics/RareShare Podcast Series: Ask the Expert & Patient Navigation (Deepask1)Rare Genomics Institute RareShare Ask the Expert:Podcast Series, Disease Specific Q&A Sessions, For feedbacks contact, Scientific Director, Rare Genomics Institute: Deepa Kushwaha, deepa.kushwaha@raregenomics.org (Music credit: www.bensound.com)2015-11-241h 00Rare Genomics / RareShare Podcast Series: Ask the Expert & Patient NavigationRare Genomics/RareShare Podcast Series: Ask the Expert & Patient Navigation (Deepask1)Rare Genomics Institute RareShare Ask the Expert:Podcast Series, Disease Specific Q&A Sessions, For feedbacks contact, Scientific Director, Rare Genomics Institute: Deepa Kushwaha, deepa.kushwaha@raregenomics.org (Music credit: www.bensound.com)2015-08-1356 minRare Genomics / RareShare Podcast Series: Ask the Expert & Patient NavigationRare Genomics/RareShare Podcast Series: Ask the Expert & Patient Navigation (Deepask1)Rare Genomics Institute RareShare Ask the Expert:Podcast Series, Disease Specific Q&A Sessions, For feedbacks contact, Scientific Director, Rare Genomics Institute: Deepa Kushwaha, deepa.kushwaha@raregenomics.org (Music credit: www.bensound.com)2015-06-031h 13Rare Genomics / RareShare Podcast Series: Ask the Expert & Patient NavigationRare Genomics/RareShare Podcast Series: Ask the Expert & Patient Navigation (Deepask1)Rare Genomics Institute RareShare Ask the Expert:Podcast Series, Disease Specific Q&A Sessions, For feedbacks contact, Scientific Director, Rare Genomics Institute: Deepa Kushwaha, deepa.kushwaha@raregenomics.org (Music credit: www.bensound.com)2015-04-1700 minRare Genomics / RareShare Podcast Series: Ask the Expert & Patient NavigationRare Genomics/RareShare Podcast Series: Ask the Expert & Patient Navigation (Deepask1)Rare Genomics Institute RareShare Ask the Expert:Podcast Series, Disease Specific Q&A Sessions, For feedbacks contact, Scientific Director, Rare Genomics Institute: Deepa Kushwaha, deepa.kushwaha@raregenomics.org (Music credit: www.bensound.com)2015-04-1357 minRare Genomics / RareShare Podcast Series: Ask the Expert & Patient NavigationRare Genomics/RareShare Podcast Series: Ask the Expert & Patient Navigation (Deepask1)Rare Genomics Institute RareShare Ask the Expert:Podcast Series, Disease Specific Q&A Sessions, For feedbacks contact, Scientific Director, Rare Genomics Institute: Deepa Kushwaha, deepa.kushwaha@raregenomics.org (Music credit: www.bensound.com)2015-04-1348 minRare Genomics / RareShare Podcast Series: Ask the Expert & Patient NavigationRare Genomics/RareShare Podcast Series: Ask the Expert & Patient Navigation (Deepask1)Rare Genomics Institute RareShare Ask the Expert:Podcast Series, Disease Specific Q&A Sessions, For feedbacks contact, Scientific Director, Rare Genomics Institute: Deepa Kushwaha, deepa.kushwaha@raregenomics.org (Music credit: www.bensound.com)2015-04-1321 minRare Genomics / RareShare Podcast Series: Ask the Expert & Patient NavigationRare Genomics/RareShare Podcast Series: Ask the Expert & Patient Navigation (Deepask1)Rare Genomics Institute RareShare Ask the Expert:Podcast Series, Disease Specific Q&A Sessions, For feedbacks contact, Scientific Director, Rare Genomics Institute: Deepa Kushwaha, deepa.kushwaha@raregenomics.org (Music credit: www.bensound.com)2015-04-1357 minRare Genomics / RareShare Podcast Series: Ask the Expert & Patient NavigationRare Genomics/RareShare Podcast Series: Ask the Expert & Patient Navigation (Deepask1)Rare Genomics Institute RareShare Ask the Expert:Podcast Series, Disease Specific Q&A Sessions, For feedbacks contact, Scientific Director, Rare Genomics Institute: Deepa Kushwaha, deepa.kushwaha@raregenomics.org (Music credit: www.bensound.com)2015-02-2558 minRare Genomics / RareShare Podcast Series: Ask the Expert & Patient NavigationRare Genomics/RareShare Podcast Series: Ask the Expert & Patient Navigation (Deepask1)Rare Genomics Institute RareShare Ask the Expert:Podcast Series, Disease Specific Q&A Sessions, For feedbacks contact, Scientific Director, Rare Genomics Institute: Deepa Kushwaha, deepa.kushwaha@raregenomics.org (Music credit: www.bensound.com)2015-02-1347 min