Retina International

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 is a joint initiative of Retina International, ERN-EYE, Foundation Fighting Blindness and the Ocular Diseases Foru,m 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.

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.

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; 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: [email protected]

Further information on Genetic Testing is available on the Foundation Fighting Blindness website:

Open Access Genetic Testing Program

General Genetic Testing Information

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.

This week, RI Science Communications Executive, Seán Heagney welcomes Petia Stratieva, MD, PhD to the In-Focus podcast. Petia is a medical doctor and passionate patient advocate as a person living with Retinitis Pigmentosa who also has significant experience working in industry and thus understands the perspective of many stakeholders within the retina community.

In this episode, Petia explains to Seán the challenges she and many others face to raise awareness around retinal conditions, including inherited retinal diseases (IRDs) in Bulgaria and Eastern Europe and how this inspired her to establish Retina Bulgaria in 2018.

Petia also speaks in depth about the importance of inter-organisational engagement throughout Europe and the globe, as well as the need for transnational partnership to support the establishment of smaller and more recently founded organisations to help them grow and contribute as a vital part of the global community.

In episode 9 of the In-Focus podcast, Avril is joined by Chad Andrews from Fighting Blindness Canada (FBC). Chad works at FBC as Senior Advisor on Policy, Equity and Access. In their discussion, Avril and Chad discuss the multifarious projects and educational initiatives he has been involved in with FBC, including Vision Class and the Young Leaders Program as well as other newly established projects to support FBC’s members during COVID-19.

Chad speaks in detail about some of FBC’s current initiatives, including Vision Quest and FBC’s ongoing webinar series View Point, which ranges from presentations on scientific research, such as stem-cell therapy, to discussions on social distancing and coping with sight loss during COVID-19. Registration for these webinars is free and can be done on the FBC website, where recording for previously-held meetings can also be found.

Chad also explains to Avril the burden-of-illness studies being conducted by FBC during this time to understand the challenges and obstacles of living with vision loss from the patient’s perspective, as well as their Cycle For Sight fundraising event which is scheduled for Saturday June 20th 2020.

It’s certainly not an episode to be missed!

In episode 8 of the In-Focus podcast, Avril welcomes Carol Brill to speak about her life and experience as a person living with Usher Syndrome during the COVID-19 pandemic.

In addition to being on the Board of Directors for Fighting Blindness Ireland and CureUsher, Carol is very involved with the Retina International Usher Syndrome Special Interest Group and leads a very active lifestyle, as a member of her local Stackstown golf club and Irish Blind Golf.

In her interview with Avril, Carol speaks openly and honestly about how the current pandemic has impacted her as a person living with a visual impairment,  and the issues she has faced with respect to the accessibility of many virtual platforms for the visually impaired community. As these means of communication become more prominent, Carol recognises that special considerations will need to be made to make these technologies more inclusive and accessible for the retina community.

Additionally, as a person living with what she describes to be an “invisible” disability, Carol highlights the importance of raising awareness around the reality of retinal conditions and other disabilities which are not so easily recognised and urges us to become a more compassionate and considerate society post COVID-19.

This week, Avril welcomes Professor John Flannery to the Retina International In-Focus podcast. John is Professor of Vision Science and Neuroscience in the Department of Molecular Biology in University of California, Berkeley.

In this episode, John’s explains the concept of optogenetics; a technique which involves light and genetic engineering (editing the genetic information) to control neuronal cells, and how he is applying it in his research to restore normal light-sensing capability to the photoreceptor cells of the retina and treat retinal conditions.

Photoreceptor cells are responsible for detecting light which enters the eye and converting it to electrical impulses which are delivered to the brain, so images can be formed of our external environment. As many common and rare retinal conditions are caused by the degeneration and death of the rod and cone photoreceptor cells to cause a decline in peripheral or central vision respectively.

In addition to discussing optogenetics, John also discusses other forms of gene therapy which are being investigated in treating a number of common and inherited retinal diseases, including Age-related Macular Degeneration and Leber Congenital Amaurosis.

This week, Dr. Orla Galvin Director of Research Policy at Retina International hosts and welcomes  Marina Sutter, Interim Chair of the Retina International Youth Council to our latest episode in a series of In-Focus podcasts.

At the age of 12, Marina was diagnosed with an inherited retinal disease (IRD) called Stargardt Disease, a form of Juvenile Macular Degeneration. Although a challenging time for her, Marina remembers fondly the incredible support she received from her teachers and parents, who supported and empowered her throughout her journey. However, through Marina’s involvement and experience in the retina community at large, she is acutely aware that many young people have not had the same positive experiences, with many lacking similarly empowering figures in their lives.

Through her role at Retina International as Interim Chair of the Retina Youth Council, Marina is working to provide comprehensive resources and social supports for young people living with retinal degenerations globally. Additionally, Marina believes this will help to establish a wide-reaching and welcoming community for young people to share their experiences, meet other young people in similar circumstances and realise they are not alone, something Marina regrets to admit she has heard too often from young people in the past.