About Stargardt’s

Stargardt’s disease is an inherited progressive disease that affects the retina.

The disease causes a blurring of vision, especially the ability to see fine details, for example difficulty reading a book and recognising faces.

It is most commonly diagnosed in children and young adults, but can also be diagnosed in middle age and less often in older people. It affects approximately one in 10,000 people and therefore is classed as a rare condition.

There is currently no treatment or cure for Stargardt’s disease.

Rare Disease Day

28th February 2021

Stargardt’s Connected Community

This is a community! Our community includes people affected by Stargardt’s, clinicians, researchers, opticians and pharmaceutical industries.

If you would like to contact us, contribute any ideas or suggestions to our website, please click on the button below.

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Gift Aid It!Add 25% more to your donation at no cost to you. A Gift Aid declaration allows Stargardt's Connected to claim tax back on eligible donations. It means that for every £1 you donate to Stargardt's Connected we can claim back 25p, at no extra cost to you.

By ticking the "Yes" box, I agree I would like Stargardt's Connected to reclaim the tax on all qualifying donations I have made, as well as any future donations, until I notify them otherwise. I understand that if I pay less Income Tax and/or Capital Gains Tax than the amount of Gift Aid claimed on all my donations in that tax year I may be asked to pay any difference. I understand that Stargardt's Connected will reclaim 25p of tax on every £1 that I give.

What is Gift Aid?

Gift Aid does not cost you a penny more, but can add an additional 25p to every £1 you donate. When Stargardt's Connected receives a donation from a UK taxpayer, we're entitled to claim an amount of tax (calculated at the basic rate of income tax in that year) paid on that donation. Once you have given your permission for us to do this on your behalf, there is no need for you to do anything else.

All that is required is that you must be a taxpayer and that would have paid or will pay sufficient Income and/or Capital Gains Tax to cover all the Gift Aid claimed on all your donations in that tax year. Please note that it is your responsibility to pay any difference.

The amount of tax we claim will be 25% of the total value of your donations in that tax year. Furthermore, if you are a higher taxpayer, you are also entitled to claim the difference between the basic rate which we will claim and the amount of tax you have actually paid. For further details on how you can do this, please contact your tax office. If your tax situation changes and your gifts will no longer be eligible for the Gift Aid scheme please contact us and we will amend your record accordingly.

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Learn all about our fundraising and what you can do to join in and help!


Unfortunately, due to the current pandemic, we are unable to hold any face to face meet ups at the moment. However, we understand the importance of connecting with our community and so hold regular Zoom sessions for those affected by the condition. These are informal sessions and have proved really popular as we connect with people around the world sharing stories and tips.

We also hold separate fun informal Zoom sessions for children and young people with Stargardt’s.

If you would like to find out more or join our sessions, then please leave a message and we will get back to you.

We use events to raise awareness, provide support, build our community and raise funds. Pictures from previous events can be seen below. As and when we are able to have events again we will list them here on the website.

Forthcoming Events

Rare Disease Day Zoom meeting

Sunday 28th February
12pm - 2pm GMT