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Since Stargardt's Day the patient panel have been working to set up a new patient group called Stargardt's Connected to support people living with Stargardt disease.
Read our World Rare Disease Day 2019 interview with Chief Executive Officer and co-Founder Bhavna Tailor on how the group are bringing this community together today and about their plans for the future.
On Saturday 18th March 2017, the NIHR Moorfields Biomedical Research Centre and UCL Institute of Ophthalmology hosted a meeting in London for people with Stargardt disease. The aim of the meeting was to bring together those affected by Stargardt disease, their families and supporters to:
Meet one another and share both experiences as well as hints and tips for daily living
Find out about Stargardt disease and some of the research being undertaken to address it from researchers and clinicians
Discuss what people feel should be the priorities for the future, with the opportunity to share these with clinicians, researchers and charities supporting people with Stargardt disease and their families.
An opportunity for those attending to meet with organisations who are providing various kinds of support to people with Stargardt’s disease.
Throughout the day people answered important questions of interest - find out what the responses were here.
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