Preliminary schedule

Session labelling: K= Keynote – L= Lay – P = Professional.

Programme (PDF)

17:30 – 19:00 Opening ceremony

17:30 – 17:50 K.1.1 Keynote: Phenotyping and Genotyping in inherited retinal diseases.
Speaker: Professor dr. Bart Leroy, University of Ghent, Gent, Belgium

08:30 – 10:00 P.2.1 Age related macular Degeneration.
Moderator: Dr. Jóhann Ragnar Guðmundsson

08:30 – 08:50
The socioeconomic impact of GA and wAMD in Bulgaria, Germany and the United States
Speaker: Nabin Paudel, Retinal International

08:50 – 09:05 AMD research at Oslo University Hospital: from LUCAS to compounding pharmacy and beyond
Speaker: Professor dr. Morten Carstens Moe, Oslo University Hospital, Oslo, Norway

09:05 – 09:15 Off-label use of Avastin: Scandinavian disparities
Speaker: Tomas Bro, MD, PhD, Höglandssjukhuset, Eksjö, Sweden

09:15 – 09:25 The risk of extending AMD treatment
Speaker: David Epstein, MD, PhD. Sankt Erik Eye Hospital, Karolinska Institute, Stockholm, Sweden

09:25 – 09:35 The Swedish Macula Register
Speaker: Inger Westborg, MD, PhD. Uppsala University Hospital, Uppsala, Sweden

09:35 – 09:50 AMD Epidemiology. Genetics & Associated Serum Proteins.
Ocular, Systemic & Lifestyle Risks
Speaker: Professor emeritus dr. Friðbert Jónasson, University of Iceland, Iceland

09:50 – 10:00 QnA

08:30 – 10:00 L.2.1 Retinal degenerations. Clinical aspects
Moderator: Professor dr. Elise Heon, The Hospital for Sick Children, Toronto, Canada

08:30 – 08:50 Clinical aspects of IRD
Speaker: Professor dr. Elise Heon. The Hospital for Sick Children, Toronto, Canada

08:50 – 09:10 Clinical aspects of inherited macular degenerations
Speaker: Associated professor dr.Line Kessel, Department of Ophthalmology, Rigshospitalet, Copenhagen, Denmark

09:10 – 09:30 Syndromic forms of IRD
Speaker: Professor dr. Hélène Dollfus, CARGO, Hôpitaux Universitaires de Strasbourg, France

09:30 – 09:50 The genetic testing landscape
Speaker: Fiona Waters, Retina International, Dublin, Ireland

09:50 – 10:00 QnA

10:00 – 10:30 Coffee break.

10:30 – 11:30 P.2.2 Assessment of Endpoints in clinical studies
Moderators Associate professor dr. Cecilie Bredrup, Bergen, Norway and Professor dr. Sten Kjellström, Lund, Sweden

10:30 – 10:50 Experiences with Luxturna
Speaker: Associate professor dr. Line Kessel, Department of Ophthalmology, Rigshospitalet, Glostrup, Denmark

10:50 – 11:10 Paediatric specificities in trials
Speaker: Professor dr. Elise Heon, MD, The Hospital for Sick Children, Toronto, Canada

11:10 – 11:30 Developing Patient Relevant Outcomes in Gene Therapy Trials: The Novel Functional Vision Endpoint, the Multi-luminance Mobility Test (MLMT)
Speaker: Dr. Daniel Chung, DO, MA, Philadelphia, USA

10:30 – 11:30 L.2.2 Retinal degenerations – the genetics
Moderator: Professor dr. Jón Jóhannes Jónsson, National University Hospital, Reykjavík, Iceland

10:30 – 10:50 Pattern of inheritance – easy to understand
Speaker: Dr. Eirný Þórólfsdóttir. National University Hospital, Reykjavík, Iceland

10:50 – 11:10 Understanding the results – a difficult task
Speaker: Professor dr. Jón Johannes Jónsson, National University Hospital, Reykjavík,
Iceland

11:10 – 11:20 Lessons from Iceland on the diversity of genetic causes
Speaker: Daníel Þorsteinsson

11:20 – 11:30 ABCA4 related IRDs
Speaker: Professor dr. Frans Cremers, Radboud University, Nijmegen, Netherlands

11:30 – 12:00 K.2.1 Keynote: Stem cell therapy for retinal regenerative diseases
Speaker: Dr. Masayo Takahashi, Vision Care Inc., Kobe, Japan

12:00 – 13:30 Lunch

13:30 – 14:00 K.2.2
Keynote: Scientific results, a rollercoaster between hope and deception
Speaker: Christina Fasser, former president of the Retina International, Zurich, Switzerland

14:00 – 15:00 P.2.3 Phenotype-Genotype Correlations in IRD
Moderators: Josephine Prener Holtan MD, PhD, Oslo University Hospital, Oslo, Norway, and Professor dr. Bart Leroy, Ghent, Belgium

14.00 – 14.10 Natural history and clinical characterization of patients with retinitis pigmentosa caused by mutations in the PRPF31 gene
Speaker: Kristian Lisbjerg, MD, PhD student, Department of Ophthalmology, Copenhagen University Hospital, Denmark

14.10 – 14.20 Genetic basis and phenotypic characterization of Danish patients with Achromatopsia
Speaker: Mette K.G. Andersen, MD, Department of Ophthalmology, Copenhagen University hospital, Rigshospitalet-Glostrup, Denmark

14.20 – 14.35 Whole exome sequencing in the diagnosis of hereditary retinal disorders: A clinical perspective
Speaker: Ragnhild Wivestad Jansson, MD, PhD, Department of Ophthalmology, Haukeland University Hospital, Norway

14.35 – 15.00 ERN-EYE a booster for patients care and research for Rare Eye Diseases in Europe.
Speaker: Professor dr. Helene Dollfuss, Service de Génétique Médicale, Hôpital de Hautepierre, Strasbourg, France

14:00 – 15:00 L.2.3 Basics of stem cell and gene-based therapies
Moderator: Professor dr. Kapil Bharti. National Eye Institute, Bethesda, USA

14:00 – 14:20 Overview of on-going clinical trials with stem cells
Speaker: Professor Dr. Goran Petrovski.

14:20 – 14:35 Stem Cell Based Trials for AMD
Speaker: Professor dr. Kapil Bharti. National Eye Institute, Bethesda, USA

14:35 – 14:50 Clinical trial in opto-genetics
Speaker: Professor dr. Isabelle Audo, INSERM, Paris, France

14:50 – 15:00 How to identify real treatments and good clinical trials as a patient
Speaker: Martin Smedstad, The Retinitis Pigmentosa Association, Oslo, Norway

15:00 – 15:30 Coffee break.

15:30 – 16:00 K.2.3
Keynote: Restoration of vision
Speaker: Professor dr. Mark S. Humayun. University of Southern California, Los Angeles, USA

16:00 – 17:00 P.2.4. Innovations in Ophthalmology.
Moderators: Christina Fasser, Retinal International, and Professor dr. Einar Stefánsson. University of Iceland, Iceland

16:00-16:15 Agnostic gene therapy approaches
Speaker: Dr. Daniel Chung, DO, MA, Philadelphia, USA

16:15-16:30 Eye drops with solubilizing nanoparticle technology in the treatment of Diabetic Macular Edema
Speaker: Þorsteinn Loftsson. University of Iceland, Oculis SA Reykjavik, Iceland

16:30-16:45 Treatment approach for dry AMD – a long journey

16:45-17:00 Gene therapies to protect cones
Connie Cepko with streaming in

16:00 – 17:00 L.2.4  Service and Coping with Low Vision
Moderators: Vala Jóna Garðarsdóttir and Rosa María Hjörvar Iceland.

16:00 – 16:15 National Institute for the blind and visually impaired in Iceland
Speakers: Elva Dögg Jóhannesdóttir Ophthalmologist and Vala Jóna Garðarsdóttir O&M

16:15 – 16:30 Reading with auxiliary aids
Speaker: Rósa María Hjörvar. PhD student in Literature at the University of Iceland

16:30-16:45 The assistive technology, apps etc.
Speakers: Baldur Snær Sigurðsson and Hlynur Þór Agnarsson

16:45 – 17:00 Coping with visual and hearing impairment
Speakers: Halla Dís Hallfreðsdóttir and Elín Yr Hafdísardóttir Arnardóttir

08:30–10:00 P.3.1 New Developments in IRD.
Moderator: Professor dr. Michael Larsen

08:30-08:50 Accessing Genetic Testing for IRDs: The Patient Perspective.
Speaker: Fiona Waters, Retina International, Dublin, Ireland

08:50-09:10 ABCA4 retinal dystrophies
Speaker: Professor dr. Frans Cremers, Radboud University, Nijmegen, Netherlands

09:10- 09:30 PERCEIVE study report: Real-world safety and effectiveness of voretigene neparvovec AND Evaluationg a new questionnaire to assess symptoms in RP and LCA
Speaker: Professor dr. Dominik Fischer, Oxford Eye Hospital, University of Oxford, Oxford, United Kingdom

09:30-10:00 Medical therapies in IRD
Speaker: Professor dr. Robert Koenekoop, Montreal Childrens Hospital, Montreal, Canada

08:30-10:00 L.3.1 Clinical trials and therapies from a patient’s perspective
Moderator: Martin Smedstad, Oslo, Norway

08:30 – 08:50 Overview and future on on-going clinical trials
Speaker Professor dr. Elise Heon, MD, The Hospital for Sick Children, Toronto, Canada

08:50 – 09:10 RPE65 – the first gene therapy on the market
Speaker: Associate professor dr. Line Kessel, Glostrup, Copenhagen, Denmark

09:10 – 09:30 Oligonucleotides – a hope for all?
Speaker: Professor dr. Bart Leroy, Gent University, Ghent, Belgium

09:30 – 09:50 My personal experience of gene therapy
Speaker: Camilla Jensen, Oslo, Norway

10:00 – 10.30 Coffee break.

10:30 – 12:00 P.3.2 Stem cells and cell-based therapies of retinal diseases.
Moderator Professor Dr. Goran Petrovski, Oslo, Norway

10:30 – 10:50 Initiating a Phase I/IIa clinical trial for an autologous iPS cell therapy for macular degeneration: from bench-to-bedside
Speaker: Dr Kapil Bharti (NIH/NEI), Bethesda, USA

10:50 – 11:10 Towards stem cell-based therapy in retinal degeneration.
Speaker: Professor Dr. Anders Kvanta, Stockholm, Sweden

11:10 – 11:30 Genetically corrected is-derived RPE cells for cell therapy of hereditary retinal dystrophy.
Speaker: Dr. Slaven Erceg, Valencia, Spain

11:30 – 11:50 Subretinal implantation of primary human RPE cells in minipig eyes. Speaker: Professor Dr. Goran Petrovski, Oslo, Norway

11:50 – 12:00 Retinal repair by autologous transplantation.
Speaker: Docent Dr. Xhevat Lumi

10:30 – 12:00 L 3.2 Retina International – the global challenges
Global Genetic Testing Landscape
Moderator: Fiona Waters, Retina International, Ireland

10:30 – 11:15 Impact of age related retinal diseases on society, and calls to action
Speaker: Nabin Paudel, RI, Ireland
Panel Discussion – TBC

11:15 – 12:00 Genetic Testing Landscape – a global policy action to support equitable access.
Speaker: Avril Daly, Retina International, Ireland
Panel Discussion – TBC

12:00 – 13:00 Lunch.

13:00 – 14:00 K.3.1 Keynote: Gene based therapies of retinal diseases
Speaker: Professor dr. Artur Cideciyan, University of Pennsylvania, Philadelphia, USA

14:00 – 15:00 P.3.3 Gene based therapies of retinal diseases
Moderator: Eeva-Marja Sankila, MD, PhD, Helsinki University Hospital, Helsinki, Finland

14:00 – 14:15 CPK850 gene therapy in RLPB1 patients
Speaker: Professor dr. Anders Kvanta, Karolinska Institute, Stockholm, Sweden

14:15 – 14:30 Gene therapy of Choroideraemia and X-linked retinitis pigmentosa – Lessons to be learned
Speaker: Professor dr. Robert Koenekoop, Montreal Childrens Hospital, Montreal, Canada

14:30 – 14:45 Retinal gene therapy in choroideremia patients – surgical aspects. Speaker: Professor dr. Ilkka Immonen, Helsinki University Hospital, Helsinki, Finland.

14:45 – 15:00 Gene therapy of Usher syndrome.
Speaker: Professor dr. Isabelle Audo, Institute de la Vision, Paris, France. Confirmed

14:00 – 15:00 L.3.4 Programme in Icelandic for the public.
Stjórnandi: Sigþór U. Hallfreðsson, Félag blindra og sjónskertra, Íslandi

14:00-14:20 Hvað er efst á baugi í rannsóknum og meðferð arfgengra sjónhimnusjúkdóma?
Prófessor dr. Ragnheiður Bragadóttir, Oslo universitetssykehus, Osló, Noregi

14:20-14:40 Greining og skráning arfgengra sjónhimnusjúkdóma á Íslandi
Prófessor dr. Jón Jóhannes Jónsson, Landspítalinn, Reykjavík

14:40-14:00 Hvernig getum við með arfgenga sjónhimnusjúkdoma verið með í rannsóknum?
Helgi Hjörvar, Félag blindra og sjónskertra, Íslandi

15:00 Grand finale, future steps – Closing ceremony for RIWC and NOK 2022
Speaker: Professor dr. Bart Leroy, University of Ghent, Gent, Belgium
Speaker: Professor dr. Einar Stefánsson, University of Iceland, Iceland
Introduction of NOK2024

Conference Programme Outline

Thursday 9 June
RIWC 2022 View NOK 2022 Programme
Hall Norðurljós Björtuloft Eldborg
12:00-13:30
13:30-15:00
15:00-15:30
15:30-17:00
17:30-19:00 NOK and RIWC OPENING CEREMONY @ ELDBORG HARPA.

The President of Iceland, Mr. Guðni Th. Jóhannesson, will open the congress

Keynote:Phenotyping and Genotyping in inherited retinal diseases.
Prof. Bart Leroy from the University of Ghent, Gent, Belgium

Speaker: Kári Stefánsson
17:30-17:50 Keynote: Phenotyping and Genotyping in inherited retinal diseases.
Speaker: Professor dr. Bart Leroy, University of Ghent, Gent, Belgium"
Saturday 11 June
RIWC 2022 View NOK 2022 Programme
Hall Norðurljós (Professional) The Reykjavik EDITION (Layman)
08:00-08:30
08:30-10:00 New Developments in IRD. Moderator: Professor dr. Michael Larsen L.3.1 Clinical trials and therapies from a patient’s perspective. Moderator: Martin Smedstad, Oslo, Norway.
08:30-08:50 Accessing Genetic Testing for IRDs: The Patient Perspective.
Speaker: Fiona Waters, Retina International, Dublin, Ireland
08:30 – 08:50 Overview and future on on-going clinical trials
Speaker Professor dr. Elise Heon, MD, The Hospital for Sick Children, Toronto, Canada
08:50-09:10 ABCA4 retinal dystrophies
Speaker: Professor dr. Frans Cremers, Radboud University, Nijmegen, Netherlands
08:50 – 09:10 RPE65 - the first gene therapy on the market
Speaker: Associate professor dr. Line Kessel, Glostrup, Copenhagen, Denmark
09:10-09:30
PERCEIVE study report: Real-world safety and effectiveness of voretigene neparvovec AND Evaluating a new questionnaire to assess symptoms in RP and LCA Speaker: Professor dr. Dominik Fischer, Oxford Eye Hospital, University of Oxford, Oxford, United Kingdom
09:10 – 09:30 Oligonucleotides - a hope for all?
Speaker: Professor dr. Bart Leroy, Gent University, Ghent, Belgium
09:30-10:00 Medical therapies in IRD
Speaker: Professor dr. Robert Koenekoop, Montreal Childrens Hospital, Montreal, Canada
09:30 – 09:50 My personal experience of gene therapy
Speaker: Camilla Jensen, Oslo, Norway
10:00-10:30 Coffee break
10:30-12:00 Stem cells and cell-based therapies of retinal diseases.
Moderator Professor Dr. Goran Petrovski, Oslo, Norway.
Retina International - the global challenges Moderator: Fiona Waters, Retina International, Ireland
10:30 - 10:50 Initiating a Phase I/IIa clinical trial for an autologous iPS cell therapy for macular degeneration: from bench-to-bedside Speaker: Dr Kapil Bharti (NIH/NEI), Bethesda, USA 10:30 – 11:15 Impact of age related retinal diseases on society, and calls to action Speaker: Nabin Paudel, RI, Ireland Panel Discussion – TBC
10:50 - 11:10 Towards stem cell-based therapy in retinal degeneration. Speaker: Professor Dr. Anders Kvanta, Stockholm, Sweden 11:15 – 12:00 Genetic Testing Landscape – a global policy action to support equitable access. Speaker: Avril Daly, Retina International, Ireland Panel Discussion - TBC
11:10 - 11:30 Genetically corrected is-derived RPE cells for cell therapy of hereditary retinal dystrophy. Speaker: Dr. Slaven Erceg, Valencia, Spain
11:30 - 11:50 Subretinal implantation of primary human RPE cells in minipig eyes. Speaker: Professor Dr. Goran Petrovski, Oslo, Norway
11:50 - 12:00 Retinal repair by autologous transplantation. Speaker: Docent Dr. Xhevat Lumi
12:00-13:30 Lunch
13:30-14:00 Keynote: Gene based therapies of retinal diseases
Speaker: Prof. Artur Cideciyan, University of Pennsylvania, Philadelphia, USA.
14:00-15:00 Gene based therapies of retinal diseasesModerator: Eeva-Marja Sankila, MD, PhD, Helsinki University Hospital, Helsinki, Finland Programme in islandic for the public.
Stjórnandi: Sigþór U. Hallfreðsson, Félag blindra og sjónskertra, Íslandi
CPK850 gene therapy in RLPB1 patients Speaker: Professor dr. Anders Kvanta, Karolinska Institute, Stockholm, Sweden 14:00-14:20 Hvað er efst á baugi í rannsóknum og meðferð arfgengra sjónhimnusjúkdóma? Prófessor dr. Ragnheiður Bragadóttir, Oslo universitetssykehus, Osló, Noregi
14:15 – 14:30 Gene therapy of Choroideraemia and X-linked retinitis pigmentosa - Lessons to be learned Speaker: Professor dr. Robert Koenekoop, Montreal Childrens Hospital, Montreal, Canada 14:20-14:40 Greining og skráning arfgengra sjónhimnusjúkdóma á Íslandi Prófessor dr. Jón Jóhannes Jónsson, Landspítalinn, Reykjavík
14:30 – 14:45 Retinal gene therapy in choroideremia patients - surgical aspects. Speaker: Professor dr. Ilkka Immonen, Helsinki University Hospital, Helsinki, Finland. 14:40-14:00 Hvernig getum við með arfgenga sjónhimnusjúkdoma verið með í rannsóknum? Helgi Hjörvar, Félag blindra og sjónskertra, Íslandi
14:45 – 15:00 Gene therapy of Usher syndrome. Speaker: Professor dr. Isabelle Audo, Institute de la Vision, Paris, France.
15:00 GRAND FINALE AND FUTURE STEPS

Speaker: Professor dr. Bart Leroy, University of Ghent, Gent, Belgium Speaker: Professor dr. Einar Stefánsson, University of Iceland, Iceland

Introduction of NOK2024