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PODCAST

RARECast

RARECast is a Global Genes podcast hosted by award-winning journalist Daniel Levine. It focuses on the intersection of rare disease with business, science, and policy.

business

All Episodes

00:21:25

Targeting ALS with Synergistic Combinations of Therapies

RARECast ·

2022/05/13

Alon Ben-Noon, CEO of NeuroSense Therapeutic’s, discusses the company's approach to developing therapies using synergistic combinations of existing drugs, its current lead therapeutic candidate, and its efforts to target other neurodegenerative conditions beyond ALS.

en

00:34:23

How a Polish Rare Disease Organizations Is Helping...

RARECast ·

2022/05/05

Adrian Goretzki, founder and president of the Poland-based rare disease patient advocacy organization the Healthcare Education Institute, discusses the needs of Ukrainians with rare diseases, what his organization has been able to do to help those fleeing the war, and why the humanitarian crisis for these rare disease patients will last beyond the current hostilities.

en

00:39:05

Powering a New Era of Genetic Medicine

RARECast ·

2022/04/28

Ellen Thomas, clinical director and director of quality for Genomics England, discusses the outcomes from the 100,000 Genomes Project, Genomic England’s Newborn Genomes Programme, and the potential for genome sequencing to alter the diagnostic odyssey for people with rare disease.

en

00:41:17

Searching for a Diagnosis

RARECast ·

2022/04/21

Co-founder and executive director of the Rare and Undiagnosed Network Gina Szajnuk and Co-founder and acting executive director of the Undiagnosed Diseases Network Foundation Cristina Might, discuss their own diagnostic odysseys, efforts to speed the path to a diagnosis, and the upcoming Undiagnosed Rare Disease Day.

en

00:25:24

A Novel Way to Deliver Rare Disease Therapies

RARECast ·

2022/04/14

Luca Benatti, CEO of EryDel, discusses the company’s technology for encapsulating medicines in patients’ own red blood cells, its pipeline of rare disease therapies, and the advantages delivering treatments this way.

en

00:19:37

Bringing Diversity, Equity, and Inclusion to the...

RARECast ·

2022/04/07

Brianna TenBrink, autism advocate and Disability Book Week panelist, about the portrayal of people with disabilities in literature, how that’s changing, and some good reads to consider for anyone interested in participating in Disability Book Week. @globalgenes #RARECast

en

00:56:05

From Mila to Millions: Scaling N of 1 Therapies

RARECast ·

2022/03/31

Julia Vitarello, CEO of Mila’s Miracle Foundation, discusses the N=1 Collaborative, which she co-founded, the issues it is trying to address, and what it would take to take enable the development of individualized therapies broadly for patients with ultra-rare disease.

en

00:24:51

Genetically Modifying Patients’ Skin Cells to Treat...

RARECast ·

2022/03/24

Matthew Gantz, president and CEO of Castle Creek Biosciences, discusses the company’s experimental therapy for RDEB, how it works, and how the company is building out its pipeline through dealmaking.

en

00:26:20

Targeting Rare, Immunologic Disorders

RARECast ·

2022/03/18

James Mackay, president and CEO of Aristea Therapeutics, discusses the decision to spin out the company from AstraZeneca, its lead therapy in development for a rare immunologic disorder, and its collaboration and development deal with Arena Pharmaceuticals that gives its partner an option to acquire it outright.

en

00:26:40

Harnessing a Natural Mechanism to Silence Disease

RARECast ·

2022/03/10

Mark Rothera, who at the time served as CEO of Silence Therapeutics and Giles Campion, Silence’s chief medical officer and head of R&D, discuss the company’s platform technology, why it can be used to target a broad range of genetic diseases, and the company’s programs in development.

en

00:21:48

Advancing Precision Medicine with Patient Data

RARECast ·

2022/03/03

While advances have been made in the treatment of the rare blood cancer multiple myeloma, fundamental questions about how to optimize therapies for individual patients remain. The Multiple Myeloma Research Foundation launched CureCloud, an initiative to gather detailed genomic and health data from thousands of patients to both bring a precision medicine approach to the treatment of multiple myeloma and fuel the development of new breakthroughs. We spoke to Michael Andreini, president and CEO of the

en

00:32:22

Pregnancy and Motherhood for a Woman with SMA

RARECast ·

2022/02/24

SMA patient Carli Hamilton, who has chronicled her pregnancy and motherhood on Instagram, discussed what pregnancy was like, how she handles the physical demands of motherhood, and what advice she would offer other people with SMA who are thinking of becoming pregnant.

en

00:43:51

Steps to Improve Data Gathering of Rare Diseases

RARECast ·

2022/02/17

Joni Rutter, acting director of the National Center for Advancing Translational Sciences; and Annie Kennedy, chief of policy and advocacy for the Everylife Foundation for Rare Diseases, discuss the economic burden of rare diseases, the data constraints that limit a complete understanding of the impact they have, and what steps can be taken to improve the availability of patient data.

en

00:27:53

Rare Patients Learn to Make Their Voices Heard

RARECast ·

2022/02/10

Britta Dornan, senior director of communications and marketing for the EveryLife Foundation and Sarah Tompkins, advocacy chair of Rare Disease Week on Capitol Hill 2022, discuss this year’s event, why rare disease patients should consider getting involved in legislative advocacy, and how rare disease patients and caregivers can best tell their stories to lawmakers.

en

00:37:18

Empowering Patient Organizations with Real-World Data

RARECast ·

2022/02/04

Web Sun, co-founder and president of Komodo Health, discusses his company’s platform technology, its potential to improve decision-making in the healthcare arena, and how members of CZI’s Rare As One network will be able to leverage its real-word data and analytic tools.

en

00:42:12

A Healthcare Communications Student Gets an Education...

RARECast ·

2022/01/27

Health communications professional and patient advocate Carly Flumer discusses her cancer journey, her experience as a patient dealing with physicians who often spoke to her in terms she didn’t understand, and what she’d like other rare disease patients to learn from her experience.

en

00:19:24

Expanding the CRISPR Toolkit

RARECast ·

2022/01/21

Trevor Martin, co-founder and CEO of Mammoth Biosciences, about the use of CRISPR as a diagnostic tool, the advantages alternatives to Cas9 may offer, and the company’s recently announced alliance with Vertex. @globalgenes #RARECast

en

00:18:36

Marrying Antibodies to RNA Therapies to Target...

RARECast ·

2022/01/13

Sarah Boyce, CEO of Avidity Biosciences, discusses the company’s antibody oligonucleotide conjugate platform, how its AOCs can deliver RNA therapies to tissue and cell types that were previously inaccessible, and it lead program in myotonic dystrophy type 1.

en

00:22:00

Expanding Access to Whole Genome Sequencing Across...

RARECast ·

2022/01/06

Ryan Taft, vice president of scientific research for Illumina, discusses the growing case for expanded use of genome sequencing as a diagnostic tool, the iHope Genetic Health program, and its efforts to expand use of the technology in low- and middle-income communities around the globe.

en

00:37:36

A First-in-Class Approach to Treating a Rare and...

RARECast ·

2021/12/31

Sujal Shah, president and CEO of CymaBay Therapeutics, discusses the rare and chronic livers disease primary biliary cholangitis, Seladelpar, and why this first-in-class therapy has promise for addressing a condition with high unmet needs.

en

566 results

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