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Introducing the Perspectives Podcast Series
Welcome to the Retina International Perspectives Podcast series, where we bring you an insightful and in-depth look into the lives of individuals living with retinal degenerative diseases from around the globe.
Each month, we feature powerful personal stories from our members, offering a unique window into their experiences, challenges, and triumphs. In addition to these firsthand accounts, we’ll engage with leading researchers, clinicians, policymakers, and industry innovators to explore the latest advancements in retina research, cutting-edge care solutions, and the evolving landscape of support for those living with retinal conditions. Tune in for thought-provoking conversations that illuminate the path forward in the fight against retinal degenerative diseases.
Episode 1: Meet the Hosts, Avril Daly and David Sanchez
Meet our Hosts:
David Sanchez
Hi, I am David, I live in Murcia, which is in the southeast of Spain, not far from Alicante.
I live with Retinitis Pigmentosa, RPE65 gene specifically. I am currently studying for a degree in History at the University of Murcia. I am also an amateur podcaster and looking forward to joining Avril to Co-host the Perspective Podcast series on behalf of Retina International!
I like sports, especially football – or soccer as some of you will know it across the world. I believe in supporting others through volunteering and am currently doing that here in Spain as President of the Federation of Hereditary Retinal Dystrophy Associations of Spain (FARPE in Spanish), President of the Foundation Fighting Blindness (FUNDALUCE in Spanish), President of the Retina Murcia Association and chair of Membership and Communications on the Board of Directors of Retina International
I am also a member of the Board of Directors of the Spanish Federation of Rare Diseases (FEDER in Spanish)
I represent Spanish people living with rare eye diseases on the European Patient Advocacy Group at the ERN EYE. I am also a
Member of Social Policy Advocacy Group at Rare Disease Europe, EURORDIS.
I am married with two daughters.
Avril Daly
I am Avril Daly; I work as the CEO of Retina International. I volunteer on the Board of Directors of the Irish National Alliance for Rare Diseases, RDI and am the current voluntary president of Rare Disease Europe, EURORDIS. I am also a person who lives with an IRD.
I have worked in the health and research policy space for over twenty years, I am not a scientist, but I believe in science and the solutions it can bring to the challenges we face in society at large, to our health and wellbeing, our environment and beyond. I also believe that people who share a goal – no matter how big or how ambitious – can achieve it if they work collaboratively!
Unlike my co-host David, I am a listener not a podcaster! But I am looking forward to participating in RIs new Perspectives series, listening to our community, and learning from them. I also hope that in the process David may teach me some Spanish.
Series 1, Episode 2, Retinal Dystrophies
Canal Retina conversamos con Pablo Palazón Riquelme, inmunólogo, divulgador científico y autor del libro Ciencia Idiota, sobre ensayos clínicos. Exploramos qué son y su funcionamiento en la búsqueda de tratamientos para distrofias de retina, destacando fases, riesgos y ventajas para pacientes.
Canal Retina spoke with Pablo Palazón Riquelme, immunologist, science communicator and author of the book Ciencia Idiota, about clinical trials. We explore what they are and how they work in the search for treatments for retinal dystrophies, highlighting phases, risks and advantages for patients.
Series 1, Episode 3, Retina International World Congress 2024
David Sanchez from Farpe, spoke with Bart Leroy, David Keegan, Frans Cremers, Isabella Audo,Jean Bennet and Franz Baduro about:
Their feelings about the Retina International World Congress
What’s their perception on research in the near future
A message to the Retina Patient Community .
Mental Health & Rare Eye Diseases
The latest episode of the Perspectives Podcast by Retina International, co-hosted by David Sanchez and Avril Daly, focuses on the importance of mental health in the rare eye disease community. Featuring guest Matt Bolz-Johnson, a mental health lead at EURORDIS-Rare Diseases Europe, the discussion explores:
Why mental health matters: Beyond just medical treatment, quality of life and emotional well-being are crucial for individuals with degenerative eye conditions.
Challenges of rare diseases: The psychological impact of diagnosis, uncertainty, and social isolation are often overlooked but deeply affect patients and their families.
Policy and advocacy: Mental health needs to be addressed beyond healthcare, including in employment, education, and social policies.
Community & Support: Networks like Retina International’s study on mental health and Matt’s partnership network help individuals connect, share, and access resources.
Global Perspective: While mental health is becoming a policy priority post-COVID, many regions still lack structured support.
This discussion highlights the need for integrated mental health strategies to support individuals with rare diseases, ensuring they have the tools to manage emotional challenges effectively.
