Author: Neil Turner
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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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Do we have your email?
Want to know about upcoming events? Drop us your email to be added to Mailchimp and never miss out again! Info@alportuk.org
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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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RaDaR is 15
About 1200 Alport patients are registered in the Alport cohort in the UK’s really impressive Rare Renal Disease Registry (RaDaR). This event (22 May 2025) was an occasion in London to meet with other rare disease groups, and celebrate the tremendous resource that RaDaR has become. We hope for a significant publication from the Alport…
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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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The 2017 International Workshop on Alport Syndrome, 4-6 September 2017, Glasgow, UK.
The 2017 International Workshop on Alport Syndrome, 4-6 September 2017, Glasgow, UK. By invitation – open to scientists and people living with Alport Syndrome. Email research@alport.info if you would like an invite or to come and meet the researchers or if you can volunteer to help with the logistics. See flyer Alport Intl workshop flyer…
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Updated Website
The fundraising part of our website is now up to date with all the lovely fundraising that has been going on in all sorts of interesting locations. From kilt walking in Scotland to cycling in the Alps to Yorkshire Marathons. Check out our fundraising page to get inspired, try something new, do something you do all the…
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alport uk Information Day 7th January 2017
Following the great successes of our previous information days we are holding one focusing on research in London – please see flyer for details London Information Day Flyer
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The implantable bio-artifical kidney
A very interesting piece of research brought to us by one of our Edinburgh Meeting attendees Derek Keen. He has just accomplished 30 years on dialysis. A 3 minute video about a device which will transform the lives of many. The implantable bio-artificial kidney is a new way forward for renal treatment. Trials start in…
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New Research in Manchester funded by KRUK
There is exciting new research being done in Manchester by Dr Michael Randles and Sophie Collinson. A two year project funded by Kidney Research UK Dr Michael Randles, 25 I studied biochemistry at the University of Bristol and have…
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shining a light on Alport Syndrome
The 2014 International Workshop on Alport Syndrome, held in Oxford, 3-5 January 2014, brought together interested medical professionals, scientists, geneticists, academics, researchers and patient representatives from all over the world. alport uk hosted the international workshop at the Said Business School, University of Oxford. Delegates came from: Australia, China, USA, Canada and Europe. We are…
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correction of the genetic defect in Alport syndrome using the TALEN approach
One of two projects recently funded by Alport Syndrome Foundation (USA). see article
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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…