alport latest news
A big thank you to Penny Ritchie Calder, her family and friends, plus the Battersea Choral Society for raising close to £10,000 in memory of her husband Nick Bundy – an Alport Warrior. Thank you to Nick’s daughter and son … Read more
Royal Free Hospital and Great Ormond Street Hospital are looking for a small group of Alport patients aged 6-30 with certain gene changes (nonsense mutation) to participate in a clinical trial of testing a new treatment
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
All funds go to Alport UK. UK POSTAGE FREE. Our products reflect our values of quality whilst caring for the planet. Take a look at our shop: Our Alport Warriors hoodies £34.99 – made from organic cotton and recycled polyester … Read more
Register now for The 2022 International workshop on Alport Syndrome – Wednesday 7 September 2022On behalf of the Workshop Organising Committee for The 2022 International workshop on Alport Syndrome, we would like to invite you to register for the workshop … Read more
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
SAVE THE DATE Alport Information Day – Newcastle, UKSaturday 1st October 2022. More details to follow but please put it into your diary – we’d love to see you there!
SAVE THE DATEThe 2022 International workshop on Alport SyndromeTaking place in Calgary, Canada and onlineWednesday 7th September 2022 Programme and more details to follow.
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
Like our new Alport merchandise? We’ve got a couple of Christmas offers for you if you’ve been eyeing up our webshop and thinking you might want to buy some this Christmas. But don’t wait too long – offer closes at … Read more
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
Registration for The 2021 online International workshop on Alport Syndrome is now OPEN. The event takes place 30 November-4 December 2021 and is FREE to patients and patient families/carers. Saturday 4 December will give an update on patient activities around … Read more
On behalf of the Workshop Organising Committee for The 2021 online International workshop on Alport Syndrome, we would like to invite you to save Tuesday 30 November – Saturday 4 December 2021 in your diaries. This is an opportunity for the Alport community … Read more
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
Our next online workshop is on Wednesday 7 July at 7pm BST. Email firstname.lastname@example.org 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
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 email@example.com for Zoom details.
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
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
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
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 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