As is traditional at the Retina International Youth World Conferences, the event will cover research updates for interested retinal diseases, among other essential scientific topics. The Conference will also create moments for conversations about how to live well with an IRD and an exclusive panel on lived experience with multigeneration perspectives.
The big news for this year's Conference will be the Language Specific sessions. For the first time, we are organising a multi-language event. On the 2nd of September, over the last part of the Conference, there will be simultaneous sessions, each in a different language and organised by the fantastic multicultural members of the Retina International Youth Council.
Besides providing meaningful information, the Conference is a space for building connections and having a good time. We are all together on the journey of living with an IRD, so you can't miss it!
For more information on our organisation click on Retina International
12h00 - 12h05
Arriving and presenting the Conference
David Sanchez, president of FARPE (Spain) and Board member of Retina International
12h05 - 12h15
RIYC: Who we are and what we do - Marina Leite, RIYC chair
12h15 - 12h30
Message from RI - Avril Daly, CEO of RI
12h30 - 13h00
Social Media and Its Impact on Networking, and Building a Career - Laura Lopez, Membership and Engagement Coordinator of Retina International will moderate
13h00 - 13h20
Accessible gaming! Gaming being a blind or low-vision person -
Jeannine Sutter, RIYC member and Mike Schipper, Webshop Retailer
13h20 - 13h40
13h40 - 14h20
The Present and Future of IRD Research: Connecting the Community. An open conversation between patients and researchers -
Moderator María José Ruiz, Grupo Neurovis, Universidad de Alicante.
Panellists: Dr. Jasleen Kaur Jolly, ophtalmologist at University of Oxford
Dr. Jelena Malinina, EURORDIS
14h20 - 14h30
14h30 - 15h30
Research update - Ben Shaberman, Foundation Fighting Blindness
Eye2Gene - Dr. Nikolas Pontikos, UCL Institute of Opthalmology
"Understanding the Molecular Pathways in Retinal Degeneration: the Role of Fatty Acids in Retinal Degeneration" - María José Ruiz, Grupo Neurovis, Universidad de Alicante
End of Day 01
Marina Leite to close
Agenda Day 2
12h00 - 12h05
Arriving Opening David Sanchez, president of Retina FARPE and RI board (Spain)
12h05 - 13h05
Panel Living with IRD and sharing experiences among Generations - Cecília Vasconcellos, psychologist and person with LCA (Brazil); David Sanchéz, a person with RPE65, president of Retina FARPE and RI board (Spain), Christina Fasser, a person with RP Retina Suisse (Switzerland)
13h05 - 13h10
Ending Conference common sessions
Para nuestros miembros hispanohablantes, hemos dedicado tiempo para curar charlas para el segundo día de la conferencia de juventud de Retina Internacional. La imágen queda a la izquierda de este texto. Sin embargo, debajo de este mensaje tendremos el texto del horario de las sesiones. Las sesiones en portugués empezarán justo después
17h00 - 17h05
Sesión en Español - Llegada David Sánchez
17h05 - 17h10
Presentación - Nicolás Rojas, miembro de RIYC (Chile)
17h10 - 17h15
Sobre el Consejo Jovem de Retina Internacional - Marina Leite, presidente RIYC (Brasil)
17h15 - 17h20
Sobre Retina International y FARPE - David Sánchez, RIYC board (España)
17h20 - 17h30
Sobre Retina Iberoamérica - Andrés Mayor, presidente Retina Iberoamérica (España)
17h30 - 18h10
Charla científica: Actualización sobre las investigaciones para las enfermedades hereditárias de retina - Dr. Nicolas Cuenca y Dra. Victoria Maneu - Universidad de Alicante
18h10 - 18h30
Experiencia con terapia génica para RPE 65 - Uxoa, person con RPE 65 (España)
18h30 - 18h50
Importancia de la Salud Mental en las personas con Discapacidad Visual - Vivian Rizzo Milián
Psicóloga Clínica (Guatemala)
18h50 - 19h00
Cierre - Nicolas Rojas y Marina Leite
19h00 - 19h05
Fala inicial de boas-vindas - Ana Beatriz, membro do RIYC
O conselho jovem da Retina Internacional – O que fazemos? - Marina Leite, RIYC Chair
19h15 - 19h40
O esporte a deficiência visual: Possibilidades e vivencias - Eder Camargo e Stefan Brian
19h40 - 20h00
Acessibilidade em ambientes culturais através do olhar de uma educadora cega - Eduarda Lima
20h00 - 20h20
Jogos acessíveis - Isabelle Utsch
20h20 - 20h30
Encerramento - Ana Beatriz e Marina Leite
Thankfully, we’ve received speakers and panel participants from all over to spend their time educating and advocating for the visually impaired community
Avril Daly is CEO of the patient-led global umbrella organisation, Retina International, which represents the voice of charities and foundations concerned with the promotion of retina research and related health policy in 43 countries.
David is the president of FARPE and FUNDALUCE. He is passionate about improving the communication and membership structure of Retina International, and connecting with organizations in Latin America. David is diagnosed with Retinitis Pigmentosa.
Dr. Nikolas Pontikos is a group leader at the UCL Institute of Ophthalmology and Moorfields Eye Hospital who is working with his team at the Pontikos Lab and the Moorfields Reading Centre on creating Eye2Gene, an AI software that can help doctors to better diagnose patients with inherited retinal disease. His background is in computer science, bioinformatics and machine learning.
Cecilia Vasconcellos is a psychologist, specialized in behavior analysis (Paradigm) and a PHD candidate in visual sciences at UNIFESP. I work as a volunteer psychologist at the Ambulatório de Genética Ocular (EPM), an institutional psychologist at Grupo Retina São Paulo and a psychotherapist in a private clinic.
I work for the humanization of health and the social inclusion of people with disabilities.
I am a person with Leber congenital amaurosis LCA.
Jelena Malinina is a Data Director in EURORDIS – the European Organisation for Rare Diseases. Her role is to lead work on data and represent rare disease patient voice in digitalisation of healthcare. Prior to joining EURORDIS, Jelena worked for the European Consumer Organisation, the World Health Organisation, healthcare consultancy, patient organisations and governmental public health organisation.
Through her work she developed expertise in healthcare digitalisation, personal health data protection and security, artificial intelligence, medical devices, healthcare systems innovation and public health advocacy. Jelena is a member of the European Commission’s ehealth Stakeholder Working Group and a member of the External Advisory Board of the HealthData@EU Pilot project.
Jelena holds a Bachelor’s Degree in Public Administration from the Mykolas Romeris University in Lithuania and a Master Degree in European Studies from the University of Gothenburg in Sweden.
Jasleen Kaur Jolly is an optometrist working between the Nuffield Laboratory of Ophthalmology and Wellcome Integrative Neuroimaging Centre, University of Oxford, and Oxford Eye Hospital. She is actively involved in clinical research in the fields of retinal gene therapy, surgical outcomes and low vision. Her main interest is improving outcome measures following interventions for ophthalmic diseases and promoting a career in clinical translational research for optometrists embedded in multidisciplinary teams.
Vice President, Science Communications
Foundation Fighting Blindness
Ben has been communicating retinal disease science and research for the Foundation for more than 18 years. He presents the latest news on emerging therapies at local and national events for patients and families, and conducts a variety of science education activities for staff and constituents. Ben hosts the Eye on the Cure podcast series which is available on most major podcast platforms. In addition, he reports on the latest research advancements for the Foundation’s electronic and print publications. Ben also enjoys working with constituents one-on-one to help them understand their retinal disease and the research underway that may benefit them.
Ben has written three books – Retina Boy, Jerry’s Vegan Women, and The Vegan Monologues – all published by Loyola University (Maryland). He earned a master of arts in writing from Johns Hopkins University, a master of science in systems management from the University of Maryland, and a bachelor of science in computer information science from Cleveland State University.
After her primary education, she worked for 7 years as an advertisement manager in different international advertising agencies. From 1978 to 1990, Christina worked at the Swiss Federal Institute of Technology in Zurich on different projects designed to the developing world, especially in the field of Food Science.
Affected by Retinitis pigmentosa she got involved in the Swiss RP Society (today named Retina Suisse) as a founding member in 1979 and from 1986 to 2002 as its president and from 1992 to 2015 as its CEO. In 1992 she was elected president of Retina International (former International Retinitis Pigmentosa Association). In this capacity she participated in promoting research on a national and international level and coordinating the efforts made by the individual countries. After her resignation as chair of Retina International in September 2020, she continues as an advisor and advocate.
María José is a biotechnologist and a PhD student at the University of Alicante, Spain. Currently, she is working at NEUROVIS lab (Neurobiology of the Visual System and Therapy of Neurodegenerative Diseases). She is specialized in the study of the role of fatty acids in the curse of degeneration and the transport of the omega-3 fatty acid DHA to the retina. She has several publications in specialized scientific journals and had participated in diverse scientific divulgation activities. Moreover, she was awarded as one of the Best Young Investigators in 2021 by the European Association for Vision and Eye Research (EVER).
Full Professor in the Department of Physiology, Genetics and Microbiology. He leads the research group Neurobiology of the Visual System and Therapy of Neurodegenerative Diseases at University of Alicante, Spain. His research is dedicated to the understanding of the functional organization of the mammalian retina. His research interest is focused on the disease mechanisms and therapeutic treatments for retinal degenerative diseases using animal models. His work attempts to understand more about retinal degenerative diseases like retinitis pigmentosa, glaucoma and macular degeneration, and provide tactics to design various therapies. Our research uses a combination of methods beginning with behavioral and morphological analyses and followed by electrophysiological and molecular studies He has published 136 papers in prestigious journals in the field of Ophthalmology and Neuroscience and has presented more than 300 abstracts in scientific meetings. He is editor and reviewer of several international scientific journals and has received numerous international awards for his research work and scientific photographs. The multidisciplinary approach of our team made possible the collaboration on several scientific projects with universities and companies in the United States and Europe.
Dr. Nicolás Cuenca dará la sesión titulado Avances en el tratamiento de enfermedades neurodegenerativas de la retina. Dr. Cuenca ha trabajado por más de diez años en el departamento de fisología, genética, y microbiología de la Universidad de Alicante en España. Junto con Dra. Victoria Maneu, darán la charla de suma importancia para pacientes con baja visión. No se lo querán perder.
Dra. Victoria Maneu has a Ph.D. in Pharmacy in the University of Valencia (Spain) and is professor in the Department of Optics, Pharmacology and Anatomy of the University of Alicante (Spain). She is a senior researcher at the lab Neurobiology of the Visual Systema and Therapy of Neurodegenerative Diseases. she has published numerous papers in prestigious scientific journals in the fields of Opthalmology, Neuroscience, and Pharmacology. Her research is focused in understanding the molecular mechanisms of retinal degeneration and new drugs that are potential therapies for these diseases.
From Retina Guatemala, Vivián is a clinical psychologist and the current chief of the Psycology Department at the National Hospital of Salamá. She will be participating in the Spanish sessions to talk about her work in the mental health field with the visually impaired community.
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