alport latest news
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New Alport drug trial 2023
Eloxx, a pharmaceutical company, is testing a new treatment that they think might help certain people with Alport Syndrome. Alport syndrome is caused by changes (called mutations) in certain genes. Only a very small proportion of gene changes (called ‘nonsense mutations’ … Read more
Alport Research Hub launch
We were thrilled to be in Manchester yesterday celebrating the launch of the Alport Research Hub. Watch the video here. Funded by Stoneygate Trust and Kidney Research UK, the Hub provides the infrastructure and resources to improve the diagnosis and … Read more
Alport Info Day – Newcastle, Sat 1 Oct
Busy, active, lots of questions and discussion, and Prof Sayer collected urine samples for lab analysis! Later walks along the Tyne and more.
PJ Powers concert
Enormous thanks to Alport supporters Jo and Phil who earlier this month organised a private concert by the amazing singer PJ Powers – Thandeka who you might remember sang ‘World in Union’ with Ladysmith Black Mambazo at the 1995 Rugby … Read more
Alport webshop opens!
Psst! We are delighted to be able to announce that you can now buy Alport merchandise from our website – you’ll see the SHOP tab at the top of the page on this website. A massive thank you goes to … Read more
Alport Information Day 31 July 2021
Saturday 31st July from 10am-4pm is an online Alport information day. It’s FREE for patients to join and is open to everyone. Topics: latest clinical trials, nutrition, exercise, and connecting with other patients to share stories plus experts to answer … Read more
Next online workshop: ADAS and gene editing plus an Alport dog colony
Our next online workshop is on Wednesday 7 July at 7pm BST. Email research@alport.info for Zoom link. Find out about some exciting work with an Alport dog colony and gene editing plus Autosomal Dominant Alport Syndrome (ADAS). Mary Nabity from Texas A&M … Read more
Hearing workshop 23 June
Join a workshop about hearing – learn tips from patient experiences, find out about the latest hearing devices, and participate in the Q&A. This informal workshop takes place on Wednesday 23rd June at 1900h/7pm BST. Email research@alport.info for Zoom details.
Podocyte 2021 Patient Day 31 July
Save the Date! Join us at Podocyte 2021 to hear about the latest research, and for great sessions on nutrition, diet and exercise. Patients are very welcome to attend both the Patient Day on 31st July and the main meeting … Read more
Young adult session 18 March 7pm
Our first informal chat for 18-35 year old Alport patients happened on Zoom and we’re holding monthly get-togethers with the next session on Thursday 18 March at 7pm/1900GMT. It’s a great opportunity to meet with others, share ideas, get involved … Read more
Spotlight on Jie Ding’s Beijing lab
If you missed Tuesday’s workshop on the research being done on Alports in China by Professor Jie Ding and her colleagues Dr Yanqin Zhang and Dr Fang Wang from Peking University First Hospital, you can now watch it on our … Read more
Volunteer role at Alport UK
Interested in sharing/taking on the role of Alport Online Workshop Manager and working with the Alport UK team – a brighter future for those living with Alport Syndrome? 6-8 hours a week, working hours flexible, home-based with technology supplied, if necessary. … Read more
Is Alport syndrome more common than we thought?
Is Alport syndrome more common that historically thought? Join our next online workshop and hear about the research of Assistant Professor Moumita Barua and Vanessa Williams at the University of Toronto. Working with genetics databases such as those from UK … Read more
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