Keratoconus Self-Help and Support Association

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Keratoconus Self-Help and Support Association

We are a UK based charity run by a committee all of whom have a passion for helping those with this condition.

We have a Website, Forum, newsletters and Conferences.

02/10/2026

The stage is set for our meeting tomorrow. Looking forward to listening to Dan Ehrlich present the results of research into improving the design and availability of specialist contact lenses.

30/09/2026

🏃‍♂️🏃‍♀️ Our fantastic fundraisers are getting ready to go the extra mile for the Keratoconus Group! 💙

On 4th October, Johnny Sloss will be taking on the AJ Bell Great Scottish Run. Johnny was diagnosed with keratoconus at just 12 years old and underwent cross-linking shortly afterwards. Now, he’s taking on this challenge to raise money and help support others affected by KC.

Then on 18th October, Carolyn Southall will be taking on the AJ Bell Great South Run, her son recently underwent cross-linking surgery and she has received invaluable support and advice from our various members.

We’re incredibly grateful to Johnny and Carolyn for choosing to support us. Every donation, no matter the amount, helps us continue providing information, support and a community for people affected by keratoconus.

Can you help us cheer them on? 🙌

Visit our website to read more about our runners and find the links to their fundraising pages.

Good luck Johnny and Carolyn – the KC community is behind you! 💙

16/09/2026

Could inflammatory skin conditions be linked to an increased risk of keratoconus? 👁️

An interesting recent study has explored the relationship between keratoconus and several inflammatory skin conditions, including atopic dermatitis, psoriasis, seborrheic dermatitis and contact dermatitis.

Researchers found an increased five-year risk of developing keratoconus among people with several of the conditions studied, with the strongest association seen in those with atopic dermatitis.

The findings raise interesting questions about the possible role of inflammation in keratoconus and highlight the potential importance of greater awareness and earlier detection among people who may be at increased risk.

As the researchers point out, more research is needed to fully understand these relationships – but it’s an interesting development for the KC community.

Read the full article on the Keratoconus GB blog to learn more:
https://keratoconusgb.com/2026/07/10/several-inflammatory-skin-diseases-associated-with-increased-risk-of-keratoconus/

02/09/2026

📅 Join us for our Autumn Speaker Meeting!

We’re delighted to welcome Dan Ehrlich, former Head of Optometry at Moorfields, as our guest speaker on Saturday 3rd October at 11am.

Dan will be sharing the results of his continuing work to improve the design and availability of specialist contact lenses. The project began back in 2020, using advanced imaging technology and clinical data to explore better ways of fitting contact lenses for people with keratoconus.

Some of you may remember hearing an update on this fascinating work from Emma McVeigh at our 2023 AGM. Now, Dan will be presenting the latest results and developments.

Please note: this talk will not be recorded, so if you want to hear the latest findings, you’ll need to join us in person!

📍 Moorfields Education Hub
1st Floor, 15 Ebenezer Street, London, N1 7NP

Everyone is welcome, including people living with keratoconus, family members and supporters. There’ll also be a buffet lunch and plenty of opportunity to meet and chat with others in the KC community.

To help us cater for numbers, please let Anne know if you’re coming:
📧 [email protected]
📞 020 8993 4759

We hope to see you there! 💙

27/08/2026

Our Autumn Newsletter is here! 🍂💙

The latest edition of the Keratoconus Group newsletter is now on its way to our members by post or email, packed with news, research and updates from across our community.

In this issue:

👁️ Dr Waheeda Illahi explores keratoconus and other health conditions, including mental health, eye rubbing, cross-linking and contact lenses

📅 Details of our upcoming London Speaker Meeting and Zoom sessions

🏃 We celebrate Tosin Adebanjo’s fantastic London Marathon achievement and look ahead to our upcoming AJ Bell charity runners

🔬 An update on an exciting new eye imaging dataset that could help accelerate keratoconus research

💙 News from our recent Sight Village attendance and West Midlands Meet-Up

Plus, we say thank you to our retiring Chairman, Steve Graham, and share more ways to connect with and support the KC community.

Keep an eye on your letterbox or inbox for your copy!

Not a member yet? Find out more about the Keratoconus Group and how to join through our website.

19/08/2026

👁️ It’s Contact Lens Health Week!

For many people living with keratoconus, contact lenses are an essential part of everyday life – which makes looking after your lenses and your eyes especially important.

We’ve put together 5 simple reminders for healthy contact lens wear. 👆

And remember, different types of specialist lenses can have different care requirements, so always follow the cleaning, wearing and replacement advice given by your contact lens practitioner.

What’s your number one tip for looking after your lenses? Share it with the KC community below! 💙

05/08/2026

📅 Join us for our next Keratoconus Group Drop-In Zoom Meeting!

On Wednesday 19th August, we're delighted to be joined by Zsuzsanna Szabo, an Employment Specialist from Support4Sight, who will be talking about the support available to help people with keratoconus manage work alongside their condition.

Whether you're currently in work, looking for employment, or simply want to learn more about workplace support and reasonable adjustments, this is a great opportunity to ask questions in a relaxed and friendly environment.

Our drop-in meetings are open to everyone affected by keratoconus, so come along, meet others in the community and join the conversation.

To register your interest and receive the Zoom joining details, please email [email protected]

We look forward to seeing you online! 💙

22/07/2026

For many people with keratoconus, contact lenses aren't just about improving vision -they're what make it possible to work, drive, study and live independently.

Read the full story about why protecting specialist NHS contact lens services matters to so many people in our community:
https://keratoconus-group.org.uk/vital-nhs-contact-lens-service-for-keratoconus-patients-set-to-close/

15/07/2026

What a fantastic few days for the Keratoconus Group in the West Midlands! 💙

Last week, members of our team were delighted to attend Sight Village, where we had the opportunity to meet so many people, raise awareness of keratoconus, and connect with the wider sight loss community.

We also held our West Midlands Meet-Up at Aston University, where we were joined by Dr Waheeda Illahi, who spoke about her recent research involving people living with keratoconus. It was a fascinating discussion, and we're incredibly grateful to Dr Illahi for sharing her insights and taking the time to answer questions from attendees.

A big thank you to everyone who came along and helped make both events such a success. It was wonderful to catch up with familiar faces and welcome new ones to the community.

📸 Pictured: Caroline Dyer, John Thatcher, David Gable, Martin Rubenstein and Dr Waheeda Illahi

We look forward to seeing you at another Keratoconus Group event soon!

10/07/2026

🔬Exciting news for keratoconus research!**

A landmark new eye imaging dataset is set to accelerate research into diseases affecting the front of the eye, including keratoconus.

By giving researchers access to one of the world's largest anonymised collections of anterior segment eye scans, this groundbreaking resource has the potential to improve our understanding of disease progression, support the development of AI-powered diagnostic tools, and ultimately help shape the future of patient care.

Read the full article: https://keratoconus-group.org.uk/latest-research-news-landmark-dataset-to-accelerate-research-on-anterior-segment-eye-disease/

Every breakthrough starts with better data, and this is an important step forward for the keratoconus community. 💙

Address

London

Telephone

+442089934759

Website

https://www.keratoconus-group.org.uk/

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