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The patient journey | Idiopathic Pulmonary Fibrosis(IPF)
In the latest episode of the “Patient Perspectives” Podcast, Karl Freemyer, Head of BD at FIECON, a Herspiegel company, speaks with Simon Anthony Richey, a patient living with idiopathic pulmonary…
The patient journey | Chronic Back Pain
In the latest episode of “Patient Perspectives” Podcast, Karl Freemyer, Head of BD at FIECON, a Herspiegel company, talks to Chris Wade, a patient living with chronic lower back pain, whose life…
The patient journey | Citrullinaemia Type 1
In this episode of, Daniel Evans , HEOR Associate at FIECON, speaks with Charlotte Keys, a patient advocate, whose son Lucas was diagnosed with Citrullinaemia Type 1, and Jonathan Alexander Gibson,…
The patient journey | Sickle cell disease
In this episode, Tyler Piazza, BD Director at FIECON, hosts an insightful interview with Kevin Wake, CMR, CHW, M.S., a sickle cell disease patient advocacy leader and a health outcomes industry…
The patient journey | Metastatic breast cancer
In this episode Karl Freemyer, BD director at FIECON, is speaking with Emma Chaffin about her experience living with the metastatic breast cancer as a biopharmaceutical executive. Emma is a…
The patient journey | Von Hippel-Lindau syndrome (VHL)
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,…
S1E10 The patient journey | Leber hereditary optic neuropathy (LHON)
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. Leber…
S1E8 The patient journey | FOP (Fibrodysplasia Ossificans Progressiva ), Lexi's story
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…
The patient journey | SATB2-associated syndrome (SAS)
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. SATB2 Europe's aim is:“To improve…
The patient journey | Acanthamoeba keratitis
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…
The patient journey | Dravet syndrome
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…
Access for rare diseases - how to navigate conflict, compromise and collaboration
World Orphan Drug Congress panel discussion November 2021 "Access for rare diseases - how to navigate conflict, compromise and collaboration" with panellists - Karl Freemyer, Head of Business…
The patient journey | Pompe disease
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…
The patient journey | Fibrodysplasia Ossificans Progressiva (FOP)
Chris and Helen Bedford - Gay are the founders and patient advocacy leaders at FOP Friends charity. In 2009 their first child, Oliver, was diagnosed with FOP, aged just one.FOP Friends’ aim is to…
The patient journey | Migraine
In this podcast, Patient X talks to us about her patient journey and her experiences, as both a patient and patient advocacy leader.Five years ago, a high impact event led to Patient X being…
The patient journey | ATTR (transthyretin) amyloidosis and wild type amyloidosis disease
Vince Nicholas and Paul Pozzo are patient advocacy leaders at the UK ATTR amyloidosis Patient Association. Each live with a variant of the rare disease amyloidosis; ATTR (transthyretin) amyloidosis…
Frequently Asked Questions
FIECON Patient Perspectives has published 16 episodes since May 2021, covering topics in Life Sciences, Science.
FIECON Patient Perspectives is currently active with new episodes semi-annually. Average episode length is 28m.
