As soon as I was diagnosed with Keratoconus, I was straight onto Google panicking and looking for immediate support. I had never heard of this condition before, even though I found out it was actually more common than I thought. It's just not marketed enough.
In my research I came across the UK Keratoconus Self-Help and Support Association website and sent an email to Anne Klepacz, who responded to me immediately! Ever since I have received amazing support and have continued to support the committee myself by providing fundraising and helping with marketing via social media.
Together with the company I work with, all of our fundraising efforts have gone towards this charity committee. This has led to them being able to offer more support through clinical research and further marketing.
The Charity's work is focused on the following areas:
- Discussion forum
- Arranging conferences and speakers
- Liaising with hospitals to improve patient experience
- Supporting research projects
- Representing the interests of their members at a national and local level
- Providing a friendly voice on the end of the telephone
https://www.keratoconus-group.org.uk/
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