FIECON Patient Perspectives
In 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 patients who truly need them, while also increasing awareness and amplifying the patient voice to make a meaningful difference.
- Update frequency
- every 105 days
- Average duration
- 28 minutes
- Episodes
- 16
- Years Active
- 2021 - 2025
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 fi…
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 chan…
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, C…
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 exper…
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 resilien…
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, …
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 here…
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 Progressiv…
The patient journey | SATB2-associated syndrome (SAS)
SATB2 Europe's aim is:
“To improve qua…
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 Foundation…
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 2…
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 Develop…
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 en…
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 fur…
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 diagnose…
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 a…