Welcome to your March e-newsletter. As we try to keep up with what’s been happening in the news over the last few weeks, we hope you are looking after yourself and would like to take this opportunity to share our solidarity with all those caught up in the recent events in Ukraine and their friends and families.
In such a challenging time we are grateful to be able to share some positive news with you, as we continue to Beat Macular Disease together. As well as top advice from those living with macular disease, we are pleased to be able to shine the spotlight on one of our exciting research projects funded with your support, which has been described as the first of its kind anywhere in the world.
Campaign urges NHS Trusts to improve communication with patients with sight loss
A new report has revealed that people who are visually impaired, deaf or have a disability face huge barriers to the NHS. We have joined a coalition of charities calling for urgent, simple steps to be taken to ensure all patients receive the same quality of care.
Genetic researcher shines spotlight on ‘first of its kind’ project for Rare Disease Day
Dr Jamie Ellingford, who is investigating why some people with genetic changes go on to develop macular disease, while others do not, has given us an exclusive look into his project to mark Rare Disease Day.
‘Get technically savvy’ – helpful advice from the people who know!
Three people who have been living with macular disease for more than 10 years are sharing their top pieces of advice for anyone recently diagnosed or struggling to come to terms with the condition.
“It’s a rare disease and we all seem to experience it differently”
Patients living with Sorsby Fundus Dystrophy have welcomed the launch of a new support group starting this month. Sue, who has the rare, inherited form of macular disease, shares experience and why the group will help.
“Without the befriending service, it would be very depressing for so many people”Barbara,
one of our dedicated volunteers who recalls how she was left feeling depressed and hopeless after her diagnosis of age-related macular degeneration (AMD), praises our befriending service for being a ‘tremendous help’ to her and others.
Register for our March webinars
The first of our monthly Macular and Me webinars will welcome Mahi Muqit, a consultant ophthalmic surgeon from Moorfields, who will be discussing a revolutionary new eye implant which aims to restore vision for patients with dry AMD. And our second webinar, will welcome researcher Elena Piotter who will discuss her latest project which is looking into a potential new method for treating Stargardt disease.
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