Category: support
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London information day 4 July 2026
We’re planning this event to be held in central London in the Summer of 2026. Save the date!
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Beijing workshop 4-7 September
Alport UK led the organisation of this amazing international workshop in the heart of Beijing. We started with an information day for Chinese and other visiting patients. There was a large UK contribution to the science, and international collaborations are increasingly powerful.
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Alport info day Nottingham 5 July 2025
A great day with local host Dr Matt Hall and a great group of patients and families.
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Cyprus international workshop 14-16 March 2024
Another outstanding meeting was held at the Royal Hall in Nicosia, local host Prof Constantinos Deltas. The first day was entirely for patients, then an intense schedule of science with short breaks for forays into the city. It was attended by over 150 scientists from 19 countries, along with patients, families, and representatives from pharmaceutical…
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Alport Info day – Cardiff 22 April 2023
Dr Sian Griffin and colleagues joined the Alport UK Team for a great day.
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Alport Info Day – Newcastle, Sat 1 Oct
Busy, active, lots of questions and discussion, and Prof Sayer collected urine samples for lab analysis! Later walks along the Tyne and more.
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Cocoa drop-in
Many of you mentioned how useful you found the Christmas drop-in so we’re holding another on Wednesday 3 February. It’s very informal – you’ll be able to see the other participants on Zoom. We’ll share Alport UK’s plans for 2021 and bring you up to date with the UK Covid-19 vaccination guidance for renal patients…
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a review of psychosocial support for those living with Alport Syndrome
We drafted a brief for a review of psychosocial support for those living with Alport Syndrome see draft attached In a survey we ran at the end of last year about your priorities for research into Alport Syndrome, both patient and clinician responses highlighted the need to review what social and psychological support is available…