alport latest news

Join Facebook community: Alports Warriors

If you are newly diagnosed and want to connect with other people living with Alport Syndrome, please apply to join our closed Facebook page Alports Warriors

Alport workshop and fun activities at Podocyte 2020

Located in Manchester June 13/14   An opportunity to hear about the latest research and clinical trials, meet other individuals and families living with Alport Syndrome AND a unique opportunity to meet international scientific experts from all over the world. … Read more »

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

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 »

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 »

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 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 »