Shows
Rare Genomics / RareShare Podcast Series: Ask the Expert & Patient NavigationJimmy Lin RareShare PodcastRare Genomics Institute founder and president, Dr. Jimmy LIn, discusses health equity and rare diseases in this episode of the RareShare podcast series.2023-08-0836 min
Rare Genomics / RareShare Podcast Series: Ask the Expert & Patient NavigationEthan and Me with Geraldine RentonListen to RareShare's latest podcast with Geraldine Renton, book author and Irish mother of a Hunter Syndrome child. In this episode, Geraldine tells of her family's journey navigating the challenges of a rare disease that led to the writing of her book Ethan and Me. Hear about their courageous battle with adversity, as they learned of the genetic enzyme deficiency behind the disease and faced its unrelenting consequences, leading to Ethan's passing in late 2020. From learning about Ethan's diagnosis, to locating support and treatments, to just being a mom, the podcast paints a broad perspective about confronting a rare dis...2021-05-2645 min
Rare Genomics / RareShare Podcast Series: Ask the Expert & Patient NavigationMeet the Rareshare TeamThis episode features RareShare itself, and discuss various topics ranging from its goals and how to utilize its networking and informational content. We hope to provide you with a brief, but comprehensive view of the website·s features, the diverse and2020-12-0729 min
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 NavigationHow to Get Answers From Rare Disease Experts: The Rare Genomics Task Force (RGTF)Arvin Gouw, a scientist at Stanford University and a founding member of Rare Genomics Insitute, chats with us about how patients and caregivers can get answers to questions about rare diseases, clinical trials, symptoms, and more, from experts and researchers in the field with the Rare Genomics Task Force. Visit RareShare.org to find your rare disease community.2019-08-2717 min
Rare Genomics / RareShare Podcast Series: Ask the Expert & Patient Navigation3 Perspectives on Facing a Rare Disease: A Patient, a Caregiver, and an Expert Discuss Diagnosis and Treatment of Pulmonary FibrosisHear about rare disease diagnosis, treatment, and quality of life from the perspective of Pulmonary Fibrosis patient Jim Carns, his wife and caregiver Karen Carns, and Dr David Lederer, an expert from the Pulmonary Fibrosis Foundation who is also an Associate Professor at Columbia University. Jim tells us his diagnosis and treatment story, Karen explains what life is like as a caregiver or “care partner,” while Dr Lederer explains the causes of the disease, the treatment options, and upcoming Pulmonary Fibrosis research. Visit RareShare.org to find your rare disease community.2019-06-0846 min
Rare Genomics / RareShare Podcast Series: Ask the Expert & Patient NavigationGrowing up With a Rare Disease: An Alagille Syndrome Warrior on Understanding Her Rare Disease and Participating in Research Being born with, and growing up with a rare disease means you don’t necessarily know any other way of life. This month we spoke with 23-year-old Anna Laurent, who was born with Alagille Syndrome, and as she grew up, she gradually learned about what that meant, and how her life was different from other kids’ lives. She tells us about her symptoms and treatment experiences, participating in research, and her involvement with rare disease advocacy. Anna also recently graduated from college so she tells us about her new job! Visit RareShare.org to find your community.2018-12-1733 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 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)2018-05-1424 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