Shows
The Science Of BusinessCulture-Hacking, Transforming Millions of Lives - The Story of Kuntal FisherImagine being able to play a small part in bringing life-changing treatments to patients, giving people hope, and allowing them to spend a little more time with loved ones. Making a positive difference in people's lives is more than just a mission statement for founder and CEO Kuntal Fisher - it's a way of life. Together with her husband Mark, Kuntal has built a hugely successful business, FIECON, that makes life-changing treatments and healthcare more accessible to all. Their work is saving lives every day. In this episode, we dive into the story behind FIECON and how Kuntal's own b...
2024-10-0943 min
FIECON Patient PerspectivesThe 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 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...
2023-09-2017 min
FIECON Patient PerspectivesThe patient journey | FOP (Fibrodysplasia Ossificans Progressiva ), Lexi's storyIn 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 e...
2023-08-3029 min
FIECON Patient PerspectivesPatient Journey | SATB2-associated syndrome (SAS)Erika Stariha is the mother of the first child in Slovenia diagnosed with SATB2-associated (SAS) syndrome, as well as the founder and president of SATB2-Europe. SATB2 Europe's aim is “To improve quality of life for individuals with SATB2 syndrome through discovery and development of targeted treatments and enhanced availability of appropriate care”. SATB-2 associated (also know as chromosome 2q32-q33 deletion syndrome or Glass syndrome) is a rare genetic syndrome caused by mutations in the SATB-2 gene leading to developmental delays, intellectual disability, and speech and language difficulties. The main symptoms can be re...
2023-06-1621 min
FIECON Patient PerspectivesThe patient journey | Acanthamoeba keratitisJuliette 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 first-hand experience of what it means to be affected by Acanthamoeba keratitis as well as its aftermath.Her goal is to raise awareness about the rare disease Acanthamoeba keratitis by educating contact lens users (Contact lens and water don’t mix!), eye professionals to stop misdiagnosing Acanthamoeba keratitis, understand the impact the disease has, providing the right medical treatment (refer to an...
2022-11-2434 min
FIECON Patient PerspectivesThe patient journey | Dravet syndromeJosé 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. José is also a member of several rare disease and epilepsy working groups, such as Epag EpiCARE and the Eurordis Digital and Data Advisory Group, as well as a member of the advisory committee of several international projects. and from the industry.The Dravet Foundation was started with the aim of promoting, encouraging and connecting the world's leading research centers on Dravet syndr...
2022-02-2824 min
FIECON Patient PerspectivesAccess for rare diseases - how to navigate conflict, compromise and collaborationWorld 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 Development - FIECON (host)Martin Schuchardt, Director of Pricing and Market Access - FIECONSimon Eade, Vice president of Worldwide global strategy - Janssen Oriol Sola-Morales, CEO of Health Innovation Technology Transfer Eric Low, CEO - Eric Low Consulting
2022-01-3135 min
FIECON Patient PerspectivesThe patient journey | Pompe diseasePompe 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, the body uses GAA to break down glycogen, a stored form of sugar used for energy.Infantile Pompe disease is the result of complete or near complete deficiency of GAA. Symptoms begin in the first months of life, with feeding problems, poor weight gain, muscle weakness, floppiness, and head lag. Respiratory difficulties are often complicated by lun...
2021-09-1547 min
FIECON Patient PerspectivesThe 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 further research into Fibrodysplasia Ossificans Progressiva (FOP) and related conditions by supporting current and future research projects. In this podcast they talk to us about the patient journey and their experiences as both parents of a child with FOP and patient advocacy leaders.FOP is an ultra-rare disabling genetic condition and is one of the most disabling conditions known to me...
2021-08-1226 min
FIECON Patient PerspectivesThe patient journey | ATTR (transthyretin) amyloidosis and wild type amyloidosis diseaseVince 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 and wild-type amyloidosis, respectively. In this podcast they talk to us about their patient journey and their experiences as both patients and patient advocacy leaders.Amyloidosis is a protein disorder in which proteins change shape, then bind together and form amyloid fibrils which deposit in organs. As amyloid fibrils build up, the tissues and organs may not work as well as they should. Amyloidosis is...
2021-05-1833 min
FIECON Patient PerspectivesThe patient journey | MigraineIn 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 diagnosed with chronic migraines. Patient X is a volunteer with several migraine and headache non-profit organisations, she has a Master of Public Health and Epidemiology and works as a health economics and outcomes research worker. Migraines have many manifestations and according to the International classification of headache disorders, more than 50 types, these include migraine pain with and without aura, chronic mi...
2021-05-1820 min