alport latest news
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 … Read more
Transplantation
Our next Alport online workshop on Transplantation TONIGHT Wed 27 Jan at 7pm GMT gives Alport patients who are on the kidney transplant journey the opportunity to hear about the experience of a recent young transplant patient. Email research@alport.info for Zoom link … Read more
UK vaccination for relatives of transplant/stage 5 dialysis patients
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
Are Flozins a treatment breakthrough for Alport syndrome?
Listen to Professor Richard Haynes of Public engagement at Nuffield Department of Population Health inviting you to join our next online workshop on Tuesday 5 January at 7pm GMT to find out more about SGLT2 inhibitors/Flozins and kidney health. Previously used in the treatment … Read more
Christmas Drop-In – Tues 1 December 7pm
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.
Covid -19 – Latest Advice
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
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
COVID-19 – Latest advice
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
International workshop for National patient organisations
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
#fightingfailurechallenge – Sam Clarke
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
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
COVID-19 – Dialysis and transplant patients
Please refer to the latest advice at kidneycareuk.org or your local renal unit. Read more : Kidney Care UK Other useful organisations
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 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
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 research@alport.info if you would like an invite or to come and meet the researchers or … Read more