alport latest news

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 »

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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 »