alport latest news

Great to read that some of our UK transplanted patients, like Paul Matthews, are now vaccinated. You may be aware solid organ transplant recipients and now also adults on dialysis or with chronic kidney disease (stage 5) are eligible for … Read more »

A personal invitation from Aura Zealey-Smith and Patrick Walker to join an informal Christmas Drop-In on Tuesday 1 December 7pm-8pm. Email here us for the Zoom link.

If you have Alport Syndrome and want the latest advice on COVID-19, please either email us info@alportuk.org or join our closed Facebook page Alport Warriors

The 2021 International workshop on Alport Syndrome If you would like to participate in or sponsor the next workshop, please email Susie Gear at research@alport.info. We particularly encourage the following groups to participate: young people with Alport Syndrome or early career … Read more »

If you have Alport Syndrome and want the latest advice on COVID-19, please either email us info@alportuk.org or join our closed Facebook page Alport Warriors

19 August 2021, Beijing, China Inviting young people with Alport Syndrome: If you would like to participate and represent your country’s patient organisation, email us research@alport.info The 2021 International workshop on Alport Syndrome If you would like to participate in … Read more »

Congratulations to Sam who cycled 3,574 miles round Europe raising £17,083.95 for Alport UK and happily arrived back safely from lockdown in Albania. Read More Sams Story I was diagnosed with Alport Syndrome when I was eighteen months old. It’s a … Read more »

The 2021 International workshop on Alport Syndrome If you would like to participate in or sponsor the next workshop, please email Susie Gear at research@alport.info. We particularly encourage the following groups to participate: young people with Alport Syndrome or early … Read more »

Please refer to the latest advice at kidneycareuk.org  or your local renal unit. Read more : Kidney Care UK Other useful organisations

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

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 »

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) 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 »

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 »

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. 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 »

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 »

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