FIECON Patient Perspectives
FIECONIn our series of podcasts, FIECON team members engage with patient advocates and thought leaders to explore the burden, unmet needs, patient journey, and potential future treatments for specific diseases, with the aim of gaining a deeper understanding of the patient's perspective, particularly for rare diseases. At FIECON, we are dedicated to ensuring that life-changing treatments reach the patien... more
| Publishes | Infrequently | Episodes | 12 | Founded | 10 months ago |
|---|---|---|---|---|---|
| Categories | Life SciencesScience | ||||
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Latest Episodes
Von Hippel-Lindau syndrome (VHL), is an inherited condition that brings about tumors in various organs, particularly hemangioblastomas, which are blood vessel tumors found in the brain, spinal cord, and retina. more
In this podcast, Lily Mumford talks to Lauren Weinberg, Senior Associate at FIECON, about her patient journey, experience living with LHON, and how losing her vision has impacted her life. more
In this podcast, David Robins talks to Lauren Weinberg, Senior Associate at FIECON, about the patient journey, his experience as the father of Lexi who lives with Fibrodysplasia Ossificans Progressiva (FOP), and as a family after the FOP diagnosis. more
Erika Stariha is the mother of the first child in Slovenia diagnosed with SATB2-associated syndrome (SAS), as well as the founder and president of SATB2-Europe. more
Juliette Vila Sinclair-Spence is a passionate Acanthamoeba keratitis (AK) Warrior and Rare Disease Patient Advocate as well as the Founder and Chairwoman of Acanthamoeba keratitis (AK) Eye Foundation. With her patient voice, she brings personal and f... more
José Ángel Aibar became involved in the activities of the Dravet Syndrome Foundation, shortly after one of his sons was diagnosed with Dravet syndrome. He has served as President and CEO since June 2018. more
World Orphan Drug Congress panel discussion November 2021 more
Pompe disease is a rare (estimated at 1 in every 40,000 births), inherited and often fatal disorder that disables the heart and skeletal muscles. It is caused by mutations in a gene that makes an enzyme called acid alpha-glucosidase (GAA). Normally, ... more
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Chart Rankings
Apple Podcasts | #237 |  United Kingdom/Science/Life Sciences |
Apple Podcasts | #99 |  Finland/Science/Life Sciences |
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Audience
Listeners, engagement and demographics and more for this podcast.
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FIECON Patient Perspectives launched 10 months ago and published 12 episodes to date. You can find more information about this podcast including rankings, audience demographics and engagement in our podcast database.
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