alport latest news
Teen & Young Adult Day Event
April 16th – 19th 2019 10am – 5pm University of Manchester, Alliot Walk 37, M155 Manchester Come and join us with Professor Rachel Lennon and team at Manchester University for a light-hearted day to create some short information videos and … Read more
2019 International Workshop
The 2019 International workshop on Alport Syndrome is 22-24 October in Siena, Italy. For more information please email research@alport.info
SONG – standardised outcomes in nephrology
SONG (standardised outcomes in nephrology) initative by European kidney doctors: Please complete the survey to help them collect information about patient outcomes specifically about Alport syndrome. Alport UK, as a patient-driven charity, is not endorsing this company or the clinical … Read more
Help Alport Syndrome Research
A drug company in the USA is inviting UK patients and caregivers to complete the following survey and do a follow up phone interview. Alport UK asked them to present the results at The 2019 International workshop on Alport Syndrome … Read more
Alport Uk Christmas Cards now for sale
We have a selection of cards for sale this year – leaping reindeers, snowmen and hares priced at £3 (plus P&P) per pack – 10 cards per pack. Do email us at info@alportuk.org if you would like to order some. … Read more
Renal Genetics Meeting
Please save the date for a meeting on Monday 21st May 2018 at the Royal Society of Medicine, London, where we will be showcasing current knowledge and new developments, such as therapy and management, in genetic disorders of the kidney. … Read more
Alport UK Christmas Cards now FOR SALE
We have a selection of cards for sale this year – some hand drawn ones at £2.50 (plus P&P)each for a pack of 8, or leaping reindeers, snowmen and hares priced at £4 (plus P&P). Do email us at info@alportuk.org if … Read more
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 … Read more
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 … Read more
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
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. … Read more
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 … Read more
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 … Read more
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
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 … Read more