Conference Registration
Our 2026 conference will take place on Saturday 21st November from 10.00am – 4.30pm.
The venue is 1 America Square, London EC3N 2LB.
There is no cost to attend. Light refreshments, tea and coffee will be served on arrival from 10.00am onwards.
Throughout the day, there will be a separate session of games and activities for children and young people between the ages of 6-17. We are unable to offer a creche facility for younger children.
Please see below for timetable, directions and registration. If you would like to attend please ensure that you complete the Registration Form.
10.00am: Registration
Light refreshments, tea and coffee will be served.
10.30am - 12.00pm: Drop-in sessions (for in-person attendees)
In-person attendees will be able to attend a range of different drop-in sessions throughout the morning:
- Stargardt's Connected: Meet some of the team and find out what we offer and how you can get more involved
- Exhibitors: Come and meet UK charities and businesses who offer support and services to people with Stargardt's disease
- Parent's session: For parents of children with Stargardt's disease
- Living well with Stargardt's: Experience sharing of hints and tips for navigating daily life with Stargardt's disease
- Technology session: Bring your device and learn how to get the most out of it
- Meet the Scientists: Come and take part in this interactive session and speak to scientists about their research into Stargardt's disease
10.00am - 4:30pm: Young person’s session
This will run with various activities throughout the day for 6-17 year-olds. In the morning, the Tower of London will run a bespoke storytelling / activity session. In the afternoon, Lush will run games / activities.
12.00pm - 1.00pm: Lunch (will be provided)
1:00pm - 4:30pm: Plenary session (available in-person and online via Zoom)
| Time | Session / Organisations | Agenda Item |
|---|---|---|
| 1:00pm-1:10pm | Plenary opening remarks (hybrid) | Welcome from Bhavna Tailor, CEO, Stargardt’s Connected |
| 1:10pm-1:15pm | Research Plenary (hybrid) | Introduction from Prof Michel Michaelides, UCL and Moorfields Eye Hospital, and Stargardt’s Connected Medical Advisor |
| 1:15pm-1:30pm | Belite Bio (Headline Sponsor) | Dr Hendrik Scholl (Chief Medical Officer) - Tinlarebant (LBS-008) |
| 1:30pm-1:45pm | Alkeus Pharmaceutical (Sponsor) | Dr Seemi Khan (Chief Medical Officer) - Gildeuretinol (ALK-001) |
| 1:45pm-2:00pm | AAVantgarde Bio (Sponsor) | Dr Maria Gemenetzi (Clinical Development Medical Director) AAVB-039 gene therapy |
| 2:00pm-2:15pm | SpliceBio (Sponsor) | Dr Aniz Girach (Chief Medical Officer) - SB007 gene therapy |
| 2:15pm-2:30pm | UCL Institute of Ophthalmology | Dr Matteo Rizzi, UCL Lecturer and Stargardt’s Connected / Fight for Sight Small Grant Awardee. “Developing an avascular zone in the Stargardt mouse retina” |
| 2:30pm-2:45pm | Cardiff University | Dr Malgorzata Rozanowska, Senior Lecturer, and Stargardt’s Connected / Fight for Sight Small Grant Awardee. “Evaluation of whether blocking damaging blue light with a yellow filter can protect the retina from further damage” |
| 2:45pm-3:00pm | UCL Institute of Ophthalmology | Dr Nikolas Pontikos, Principal Research Fellow. “Eye2Gene: using machine learning for genetic prediction of inherited eye disease” |
| 3.00pm-3.15pm | UCL Institute of Ophthalmology | Dr Michael Crossland, Principal Optometrist. “Supporting Teenagers and Young People to Overcome Macular Problems (STOMP)” |
| 3:15pm-3:45pm | Comfort break | |
| 3:45pm-4:20pm | Community Panel |
|
| 4:20pm-4:30pm | Closing remarks | Goodbye from Bhavna Tailor, CEO, Stargardt’s Connected |
4:30pm: Finish
You can download the full agenda here.
Speaker Biographies
Bhavna Tailor
Bhavna is the Chief Executive Officer and one of the founders of Stargardt’s Connected. Bhavna has been actively raising awareness of Stargardt’s disease and fundraising for research since her son was diagnosed with Stargardt's in 2015. Bhavna sits on a number of national and international advisory groups for Inherited Retinal Disease research projects. Bhavna has been awarded the Prime Minister’s Points of Light Award for recognition for her work with Stargardt’s Connected.
Prof Michel Michaelides
Michel Michaelides is a Consultant Ophthalmologist at Moorfields Eye Hospital in the departments of Medical Retina, Inherited Eye Disease and Paediatric Ophthalmology; and is a Professor of Ophthalmology at the UCL Institute of Ophthalmology.
His clinical and research interests include inherited eye disease in adults and children; with over 500 peer-reviewed publications and 50 book chapters. He is actively involved in retinal clinical trials investigating novel therapies, being a principal investigator in 15 on-going clinical studies and trials.
Prof Hendrik Scholl
Chief Medical Officer of Belite Bio, Adjunct Professor at the Medical University of Vienna and President of the European Vision Institute.
Professor Hendrik Scholl is CMO of the clinical stage company Belite Bio that develops therapies for monogenic and genetically complex retinal diseases. From 2016 to 2024, he was Chief Physician of the Department of Ophthalmology at the University Hospital Basel. He is one of the two founding directors of the Institute of Molecular and Clinical Ophthalmology Basel (IOB), which he headed as Scientific Director from 2018 to 2024. His scientific and clinical career included positions at the University Eye Hospital Tübingen, Moorfields Eye Hospital in London and the University Eye Hospital Bonn. From 2010 to 2016, he was Professor of Ophthalmology at the Wilmer Eye Institute at Johns Hopkins University in Baltimore (USA). He is a retinal specialist with two decades of experience in treating patients with inherited retinal and macular diseases.
Dr Seemi Khan
Seemi Khan, M.D., M.P.H., M.B.A., Chief Medical Officer of Alkeus Pharmaceuticals, Inc., is an accomplished executive with a track record of bringing rare disease treatments to patients in need across multiple therapeutic areas. Prior to joining Alkeus, Dr Khan served as Chief Medical Officer at Reata Pharmaceuticals through its acquisition by Biogen, where she oversaw all clinical programs from early stage to commercialization. Dr Khan was instrumental in the approval and launch of the first treatment for Friedreich’s ataxia. Dr Khan’s experience also includes senior leadership roles at Mitsubishi Tanabe Pharma America, Quark Pharmaceuticals, Abbott and AbbVie.
An internist and nephrologist with expertise in rare disease, immunology and rheumatology, she has served as an Assistant Professor of Medicine at Tufts University School of Medicine. She further has received an M.P.H. from Harvard T.H. Chan School of Public Health and an M.B.A. from Brandeis University.
Dr Maria Gemenetzi
Maria Gemenetzi MD, MSc, Ph.D is Clinical Development Medical Director and Medical Lead of the Stargardt clinical program at AAVantgarde Bio. She is an ophthalmologist and retina specialist trained by fellowship at Southampton University Hospital. After completing her fellowship she served as NHS Consultant Ophthalmologist in Bristol Eye Hospital and as an investigator in several clinical trials in Moorfields Eye Hospital. She transitioned to the pharmaceutical industry where she worked in Global Clinical Development on various ophthalmology research projects including gene therapy for retinal disease. Maria has a record of published research articles in peer review Ophthalmology journals and has been a regular member of the Association for Research in Vision and Ophthalmology (ARVO) in the last 14 years.
Dr Aniz Girach
Aniz Girach, MBChB, MRCGP, FRCOphth qualified as an Ophthalmologist (Retina), in UK, and is the Chief Medical Officer for SpliceBio. He has 25 years industry experience holding roles in a range of big pharma companies (Lilly, Merck, Alcon) as well as smaller Biotech companies such as ThromboGenics(Oxurion), Nightstar Therapeutics and ProQR Therapeutics. He has led Teams to achieve multiple drug approvals in Ophthalmology. He is a peer-reviewer for 5 Ophthalmology journals, and has been Chief Editor of four textbooks and published over 90 abstracts/manuscripts in peer-reviewed journals. He currently holds Board (and Chair of the R&D Committee) positions in two Biotech Companies.
Dr Matteo Rizzi
Dr Matteo Rizzi is a Lecturer and Group Leader at UCL/Moorfields. He has over a decade experience in testing patient vision and developing gene therapy treatments for blindness. He also holds a position at the Timone Neuroscience Institute in Marseille, to enable late-stage pre-clinical development of gene therapy.
Dr Małgorzata Różanowska
Małgorzata Różanowska is a Senior Lecturer at the School of Optometry and Vision Sciences, Cardiff University. She earned a PhD in Biophysics at the Jagiellonian University, Poland. She was awarded a Travelling Wellcome Trust Research Fellowship at Cardiff University and then Senior Fulbright Fellowship at Duke University, USA. She was appointed in Cardiff as a lecturer in 2003.
Dr Nikolas Pontikos
Dr Nikolas Pontikos is a group leader (Principal Research Fellow) at the UCL Institute of Ophthalmology and Moorfields Eye Hospital who is working with his team at the Pontikos Lab and the Moorfields Clinical AI Lab on creating Eye2Gene, an AI software that can help to better diagnose patients with inherited retinal disease. His background is in computer science, bioinformatics and machine learning.
He has been working in ophthalmology for 10 years.
Michael Crossland
Michael Crossland is an optometrist and a Senior Research Fellow at the UCL Institute of Ophthalmology. He has worked with adults and children with low vision for more than 25 years and has published more than 50 scientific papers on vision impairment, as well as two books.
Marina Leite Brandao
Marina is from Brazil and has been engaged with patient associations worldwide for almost ten years. She has Stargardt Disease, is a trustee at Stargardt’s Connected, and is a board member of Retina International. Moreover, she has a master degree in innovation in public policy and has experience working with inclusion.
Ethan Tailor
Ethan was diagnosed with Stargardt’s when he was seven years old. He is currently 17 doing his A Levels at 6th Form. He is a Stargardt’s advocate and has featured several times in the media, including TV, radio and the press. He has also spoken internationally at conferences about his sight loss and Stargardt’s. Ethan is an avid cook and enjoys trying out new dishes regularly.
Tim Prendergast
Tim was first diagnosed with Stargardt’s at the age of eight. Despite the obvious challenges that would come as a result Tim has navigated through life striving to be the best he can be. Tim has always had a passion for sport and specifically running. This drive and determination to be his best enabled him to represent New Zealand in four Paralympic Games between 2000-2012.
Today Tim is married with two children and lives and works in London for a Corporate Bank.
Alice Cadman
Alice is a mum to two boys, wife to Josh, singer, and co-founder of Sing Education, bringing music into schools. Diagnosed with Stargardt's, she’s passionate about helping others find their vision and voice; empowering educators and building confidence in leaders. She shares her journey on 'Life as a VIP.'
Ashrafia Choudhury
Ashrafia Choudhury is the founder and Operations Manager of a charity called ‘Beyond Sight Loss’. She is also the founder of a podcast channel called ‘Eye Believe’. Its purpose is to empower, inspire and share, helping visually impaired people to create change and combat social isolation.
Meet the Scientists
Dr Matteo Rizzi
Dr Matteo Rizzi is a Lecturer and Group Leader at UCL/Moorfields. He has over a decade experience in testing patient vision and developing gene therapy treatments for blindness. He also holds a position at the Timone Neuroscience Institute in Marseille, to enable late-stage pre-clinical development of gene therapy.
Dr Małgorzata Różanowska
Małgorzata Różanowska is a Senior Lecturer at the School of Optometry and Vision Sciences, Cardiff University. She earned a PhD in Biophysics at the Jagiellonian University, Poland. She was awarded a Travelling Wellcome Trust Research Fellowship at Cardiff University and then Senior Fulbright Fellowship at Duke University, USA. She was appointed in Cardiff as a lecturer in 2003.
Dr Nikolas Pontikos
Dr Nikolas Pontikos is a group leader (Principal Research Fellow) at the UCL Institute of Ophthalmology and Moorfields Eye Hospital who is working with his team at the Pontikos Lab and the Moorfields Clinical AI Lab on creating Eye2Gene, an AI software that can help to better diagnose patients with inherited retinal disease. His background is in computer science, bioinformatics and machine learning.
He has been working in ophthalmology for 10 years.
Michael Crossland
Michael Crossland is an optometrist and a Senior Research Fellow at the UCL Institute of Ophthalmology. He has worked with adults and children with low vision for more than 25 years and has published more than 50 scientific papers on vision impairment, as well as two books.
Dr Angelos Kalitzeos
Dr Kalitzeos is a Senior Research Associate at the Institute of Ophthalmology and Honorary Research Fellow at Moorfields Eye Hospital, with a background in electronics engineering and optics. He completed a PhD in retinal vessel analysis and has several years of experience with adaptive optics imaging of single photoreceptors in humans.
Dr Thales Guimaraes
Dr Thales Guimaraes is a Clinical Research Fellow at Moorfields Eye Hospital and a Senior Honorary Research Fellow at the UCL Institute of Ophthalmology. He is a physician and ophthalmologist with a special interest in ocular genetics and inherited retinal diseases (IRDs). He earned a PhD at UCL in 2023 and has several years of experience in clinical research.
Louise Kearney
Louise Kearney, Executive Director at Fortrea’s Rare disease, Advanced therapies and Pediatrics Team (RAPT). Louise has 24 years drug development experience, as a study coordinator, clinical research associate and project manager and has spent the last eight years in RAPT implementing best practices in these unique types of studies.
Dr Saoud Al-Khuzaei
Saoud’s research for his DPhil thesis was focused on genotype-phenotype correlation in Stargardt disease and the application of artificial intelligence technologies in diagnosing the condition. Saoud is interested in diagnostics in inherited retinal diseases and on identifying biomarkers on retinal imaging that can help in diagnosing these conditions and important features to monitor when reviewing the efficacy of therapeutic interventions.
Please note: We will have sighted guides outside the underground, DLR and train stations. They will wear yellow Stargardt’s Connected t-shirts and can escort those needing assistance to the venue.
By underground: District or Circle Lines to Tower Hill Station. Further details to follow.
By DLR: Further details to follow
By train: Further details to follow
By bus: Further details to follow
By car: We do not recommend coming by car. The closest public car park to the venue is NCP London Whitechaple which is a 10-15 minutes walk away at a cost of approximately £40 to park between 9am and 5pm.
- Wheelchair access: Yes
- Wheelchair parking: Yes
- Approach to building: Street / pavement
- Door control: Push/pull
- Internal corridor width: 1.5 metres
- Mobile induction loop: Yes
- Accessible WC: Yes
- Assistance dog friendly: Yes
Conference Registration form
Thank you to the sponsors of Stargardt’s Connected Conference 2026
(Headline Sponsor)
