Genetic Counseling in Rare Diseases
Two genetic counselors, Sasha Bauer and Chloe Cheung, discuss how genetic counseling can help rare disease patients understand and cope with...
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Rare Genomics / RareShare Podcast Series: Ask the Expert & Patient Navigation
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. Le...
Episodes
20 of 29 episodesJimmy Lin RareShare Podcast
Rare Genomics Institute founder and president, Dr. Jimmy LIn, discusses health equity and rare diseases in this episode of the RareShare pod...
Clinic for Special Children
Serving the Amish and Mennonite communities in Central Pennsylvania, the Clinic for Special Children provides counseling and healthcare for...
Ethan and Me with Geraldine Renton
Listen to RareShare's latest podcast with Geraldine Renton, book author and Irish mother of a Hunter Syndrome child. In this episode, Gerald...
Meet the Rareshare Team
This episode features RareShare itself, and discuss various topics ranging from its goals and how to utilize its networking and informationa...
Don't Sell Yourself Short: Having a Career after a Rare Disease Diagnosis
No 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...
How 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 caregiv...
3 Perspectives on Facing a Rare Disease: A Patient, a Caregiver, and an Expert Discuss Diagnosis and Treatment of Pulmonary Fibrosis
Hear about rare disease diagnosis, treatment, and quality of life from the perspective of Pulmonary Fibrosis patient Jim Carns, his wife and...
All About Genomic Sequencing for Rare Disease Patients: A Focus on iHope
Genomic sequencing is something many rare disease patients may need, but may not be able to access. The Rare Genomics institute runs a progr...
Growing 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...
Coping With Your Child's Diagnosis: The Mother of a Rare Disease Patient on How She Found a Supportive Community
Anne Bruns' son Ethan was diagnosed with Atypical Hemolytic Uremic syndrome (Atypical HUS), when he was just 8 years old. Anne tells us how...
Receiving a Rare Disease Diagnosis: A Huntington's Disease Patient Shares His Experience and Advice for Coping with a New Diagnosis (Patient Navigation)
Rare Genomics Institute RareShare Ask the Expert:Podcast Series, Disease Specific Q&A Sessions, For feedbacks contact, Scientific Director,...
The Power of Community: How Patient Communities Provide Hope and Help Further Rare Disease Research (Patient Navigation)
Rare Genomics Institute RareShare Ask the Expert:Podcast Series, Disease Specific Q&A Sessions, For feedbacks contact, Scientific Director,...
Antisynthetase Syndrome Ask the Experts Podcast Series, Session II - 11/20/2017
Rare Genomics Institute RareShare Ask the Expert:Podcast Series, Disease Specific Q&A Sessions, For feedbacks contact, Scientific Director,...
Adrenomyeloneuropathy (AMN)/Adrenoleukodystrophy (ALD) Podcast Series, Session II (06/14/2017)
Rare Genomics Institute RareShare Ask the Expert:Podcast Series, Disease Specific Q&A Sessions, For feedbacks contact, Scientific Director,...
LGLL Ask The Experts Podcast Session IV
Rare Genomics Institute RareShare Ask the Expert:Podcast Series, Disease Specific Q&A Sessions, For feedbacks contact, Scientific Director,...
Hospitals, Doctors, Medical Teams: Navigating Barriers of Rare Diseases (Patient Navigation)
Rare Genomics Institute RareShare Ask the Expert:Podcast Series, Disease Specific Q&A Sessions, For feedbacks contact, Scientific Director,...
Crigler Najjar Syndrome Ask The Experts Podcast Series (05/25/2016)
Rare Genomics Institute RareShare Ask the Expert:Podcast Series, Disease Specific Q&A Sessions, For feedbacks contact, Scientific Director,...
LGLL Podcast Series III (3/25/2016)
Rare Genomics Institute RareShare Ask the Expert:Podcast Series, Disease Specific Q&A Sessions, For feedbacks contact, Scientific Director,...
LGLL Podcast Session II (11/24/2015)
Rare Genomics Institute RareShare Ask the Expert:Podcast Series, Disease Specific Q&A Sessions, For feedbacks contact, Scientific Director,...