alport latest news

Fundraising concert

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 »

Need ideas for Christmas presents?

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

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 »

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 »

Save the date – Alport Information Day

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 date – The 2022 International workshop on Alport Syndrome

SAVE THE DATEThe 2022 International workshop on Alport SyndromeTaking place in Calgary, Canada and onlineWednesday 7th September 2022 Programme and more details to follow.

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 »

Christmas merchandise offers

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 »

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 »

Registration open for The 2021 International online workshop on Alport Syndrome

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 »

Save the date: The 2021 online International workshop on Alport Syndrome

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 »

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 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 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 »