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 fibrosis (IPF).

Simon’s journey into diagnosis was unusual – what started as a seemingly minor symptom led to a scan that revealed fibrosis in his lungs. Unlike many patients who endure years of misdiagnosis, Simon’s path to clarity was comparatively swift. Yet, the real challenge came after: navigating treatment access.

Listen to the episode to find out: How many consults did Simon take before receiving clarity? How did access barriers and drug costs impact his treatment decisions? What innovations are most urgently needed in IPF over the next five years?

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 changed after a car accident.

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, Campaigns Lead at Metabolic Support UK .

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 expert.

Kevin, who was diagnosed with sickle cell disease at nine months old, is now the president of URIEL E OWENS SICKLE CELL DISEASE ASSOCIATION OF THE MIDWEST and serves on the board of directors for the International Consortium for Health Outcomes Measurement (ICHOM).

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 resilient breast cancer survivor who was diagnosed with stage 4 breast cancer five years ago at the age of 41. Facing a daunting prognosis and a treatment plan focused on palliative care, she defied the odds, with only a 22% chance of surviving five years.

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.

Listen to FIECON's latest 'Patient Perspectives' podcast with Lauren Weinberg, Senior Associate at FIECON, talking to Frankie Bryant about her journey living with VHL and the impact it has had.

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 hereditary optic neuropathy (LHON) is a rare condition that primarily affects young adults. It causes painless vision loss, typically starting in one eye and later affecting the other eye within a few weeks. Some individuals with LHON may also experience rare neurological problems like nerve issues, tremors, muscle weakness, and movement disorders.

LHON is caused by changes in mitochondrial DNA and is inherited through the maternal line. It is a rare disease affecting about 1 in 50,000 people. Many carriers of LHON do not experience significant vision loss.

However, males are four to five times more likely to lose vision than females. The annual incidence of vision loss in LHON is extremely low, around 1 in 10 million.

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.

FOP is an ultra-rare genetic condition and is one of the most debilitating conditions known to medicine. FOP causes the soft connective tissue of the body to turn into new bone.  When that occurs over or near joints, or within a muscle, it restricts the person’s movements.  This new bone, or ossification, can mean that the sufferer is eventually no longer able to move the joint.  Once movement has been lost in a part of the body, it is not possible to remove the new bone as that can aggravate the FOP and trigger further bone growth.
FOP is characterised by congenital malformations of the big toes and progressive heterotopic ossification (HO) in specific anatomic patterns. FOP is the most catastrophic disorder of HO in humans. Flare-ups are episodic; immobility is cumulative.  A common mutation in activin receptor IA (ACVR1), a bone morphogenetic protein (BMP) type I receptor, exists in all sporadic and familial cases with a classic presentation of FOP.

There is currently no treatment for FOP so investigating all avenues of research and finding more FOP doctors, who are willing to be educated about FOP, is essential.