News
Ellen Gould — Seeing Stars
Ellen Gould, an Emmy-Award winning actress with Stargardt’s speaking about her upcoming film, “Seeing Stars” which is about five women with Stargardt’s. Here’s the link where you can find out more about Seeing Stars and support the film project by making a donation direct to WMM: https://www.wmm.com/sponsored-project/seeing-stars/#:~:text=SEEING%20STARS%20is%20a%20powerful,her%20award%2Dwinning%20theater%20production. Here’s the link to Ellen Gould’s website: https://www.ellengould.org/,…
Read MoreLife of a Student
A significant percentage of disabled people have to deal with hidden or invisible disabilities which makes it super challenging to perform daily activities. An invisible disability, such as Stargardt’s disease is one which is not directly visible through a person’s exterior. To shed some light on daily life with an invisible disability, I will share…
Read MoreInternational Day of Persons with Disabilities
Disability inclusion is an essential part in achieving the Sustainable Development Goals (SDGs). According to WHO, around 1.3 billion people or 16% of the total world’s population experience disability of any kind. There is an increasing trend in these numbers because of the rise of non-communicable diseases and higher life expectancy. The International Day of…
Read MoreWorld Sight Day 2023
Around one billion people in the world suffer due to an untreated or preventable vision loss. To focus global attention on visual impairment, blindness and significance of eye health, the World Sight Day was observed for the first time on 12th October 2000. This day is observed on the second Thursday of October every year. It…
Read MoreFight for Sight and Stargardt’s Connected Joint Small Grant Award
We are pleased to be able to partner with Fight For Sight this year for the Small Grant Award Scheme. The Award is now open for applications for our Stargardt’s Research Community, with the deadline of 13:00 on Wednesday 13 September 2023. Please do share this amongst your research networks and to anyone who may…
Read MoreBelite Bio Trial update
The Dragon Study Phase 3, Multicenter, Randomized, Double-Masked, Placebo-Controlled Study to Evaluate the Safety and Efficacy of Tinlarebant in the Treatment of Stargardt Disease in Adolescent Subjects. The closing date for recruitment to the Phase 3 Belite Bio Trial is due to finish end of June 2023 and the age range to extend up to…
Read MoreGlobal survey of potential participant perspectives on ocular gene therapy
A research team from Melbourne, Australia, has developed a new questionnaire on gene therapy for inherited retinal disease, known as the Attitudes to Gene Therapy for the Eye (AGT-Eye) survey. They have completed an Australian study, in which almost 700 people with inherited retinal disease provided their views on gene therapies. You can see the…
Read MoreRetina UK Professional and Annual Conference
Retina UK are holding their Professionals and Annual Conference at the University of Westminster Marylebone Campus, London on Friday 23rd June and Saturday 24th June respectively. These events are face-to-face as well as virtual, and are free to attend. We will have a stand on both days so please come and meet us. Details about…
Read MorePoints of Light award
We are delighted to announce that the founder of Stargardt’s Connected, Bhavna Tailor, has been awarded the Prime Minister’s Points of Light Award in recognition for setting up Stargardt’s Connected and for helping to raise awareness of Stargardt’s and supporting the community. Stargardt’s Disease is a rare inherited eye condition affecting approximately 1 in 10,000…
Read MoreProfessor Frans P. M. Cremers
Professor of Ophthalmogenetics in the Department of Human Genetics in the Radboudumc in Nijmegen, The Netherlands Professor Cremers obtained his doctorate in Nijmegen in 1991, entitled ‘Positional cloning of a candidate gene for choroideremia gene’, under the supervision of Prof. B. Wieringa and Prof. H-H. Ropers. He headed the Division of Molecular Genetics from 1992…
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