Retina International

Perspectives Podcast: Episode 5- United in Vision: Retina International World Congress 2026

In this special joint episode of Canal Retina and Perspectives Podcast, recorded in Dublin, we talk about the global fight against inherited retinal degenerations (IRDs) and age-related retinal diseases – and invite you to United in Vision - the Retina International World Congress 2026 in Fort Worth, Texas.Host David Sanchez is joined by:Avril Daly – CEO, Retina InternationalJason Menzo – President & CEO, Foundation Fighting Blindness (FFB)Together, they discuss:What Retina International is: a global umbrella of patient-led organizations working to advance research, diagnosis, access to care, and patient empowerment for people living with retinal diseases worldwide.Key concerns for patients and families:Maintaining independence and accessing proper support servicesThe shock of being told you may lose visionThe importance of genetic diagnosis for IRDs (over 350 genes involved)Understanding research, clinical trials, and what they really mean for everyday lifeWhy global collaboration is essential:Researchers, clinicians, patients, policymakers, and industry working togetherBuilding capacity and support in regions where people with IRDs often stay at home without services or informationEnsuring equitable access to new therapies and care pathwaysThey then introduce the upcoming Retina International World Congress + FFB Visions Conference – “United in Vision”:When: June 12–13, 2026Where: Fort Worth, Texas, USAhttps://www.fightingblindness.org/visions-2026

Act4RED: Rare Disease Day 2026

Act4RED is a joint initiative of Retina International [https://retina-international.org/], ERN-EYE [https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=&cad=rja&uact=8&ved=2ahUKEwi_37yCmOiSAxWFhv0HHfD9CFcQFnoECB8QAQ&url=https%3A%2F%2Fwww.ern-eye.eu%2Ffr%2F&usg=AOvVaw2ndmboxCdLd6SlKX9rLyQ2&opi=89978449], Foundation Fighting Blindness [https://www.fightingblindness.org/] and the Ocular Diseases Foru,m [https://www.forumresearch.org/ocular] which brings together patients, clinicians, and researchers to improves diagnosis, care, and innovation for people living with Rare Eye Disease (RED). We are calling to Stop the Loss of Vision by improving outcomes for people affected by inherited retinal degenerations, anterior segment disorders, neuro-ophthalmic conditions, and paediatric rare eye diseases. We aim to raise awareness and visibility of these conditions, which are often underdiagnosed and underfunded and to highlight the high-unmet needs of patients to health ministries, research bodies, and regulators. We advocate for coordinated policy action at EU global levels, and to promote research, innovation and investment in retinal health. Through our actions we aim to, improve access to specialist care, rehabilitation, and emerge therapies, and ultimately enhance the quality of life for individuals and families affected by retinal degenerations.

Retina International In Focus Podcast: Professor Jose Carlos Pastor

On this week’s episode of the RI In-Focus podcast, Dr. Orla Galvin welcomes Professor Jose Carlos Pastor from the Institute for Applied Ophthalmology (IOBA) in Valladolid, Spain, who is Director of the IOBA retina group. Jose is also an ophthalmologist and joins Orla to discuss his experience of COVID-19 and its impact on ophthalmology which he believes is not being considered a priority health discipline, particularly from his experience within the clinic. Additionally, Jose speaks very passionately about the need for adopting a multidisciplinary and more unified approach to advancing research in all specialties, something he feels will emerge after the COVID-19 pandemic as scientists from various research collaborate in earnest to develop a safe and effective vaccine.

Retina International In Focus Podcast: Brian Mansfield

This week, Avril welcomes Brian Mansfield, PhD from Foundation Fighting Blindness to the RI In-Focus podcast. Brian is Chief Scientific Officer and Executive Vice President of Research with FFB and joins Avril to discuss the MyRetina tracker registry [https://www.fightingblindness.org/my-retina-tracker-registry]; a research database of people and families affected by rare inherited retinal degenerative diseases (IRDs), which is provided by FFB. Brian explains the importance of knowing your genetic code and how the MyRetina tracker works to help people understand the condition that they live with. In this way, it helps to accelerate the discovery of treatments and cures for IRDs by sharing de-identified information within the research and clinical communities to enhance our understanding of the genes causing the disease, how the disease progresses and how it impacts people’s lives. For people that are interested in joining the registry, Brian also offers information so that you can get involved. If you wish to enquire further about the registry, please contact: coordinator@MyRetinaTracker.org [coordinator@MyRetinaTracker.org] Further information on Genetic Testing is available on the Foundation Fighting Blindness website: Open Access Genetic Testing Program [https://www.fightingblindness.org/open-access-genetic-testing-program] General Genetic Testing Information [https://www.fightingblindness.org/genetic-testing]

Retina International In Focus Podcast: Russell Wheeler

This week, Avril welcomes Russell Wheeler to the Retina International In-Focus podcast. Since the diagnosis of his son with Leber Hereditary Optic Neuropathy, a rare and inherited retinal condition, Russell has been a long-standing patient advocate within the retina community, working at a European level and as a patient representative on the board of the ERN-EYE. In this episode, Russell explains in great detail the Health Technology Assessment (HTA) process, which is designed to collect and summarise information about a health technology such as drugs and medical devices with respect to their safety and effectiveness, as well as ethical, legal and other issues. In his conversation with Avril, Russell highlights the importance of patient engagement and involvement with the HTA process, and how, in his experience, having the patient perspective and voice as a key component in the decision making process has benefitted the outcomes for patient communities.