Category: latest news

  • PJ Powers concert

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    Giovanni Gaetani
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    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 World Cup in South Africa. The concert raised an amazing £620 for Alport UK for…

  • Alport webshop opens!

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    Giovanni Gaetani
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    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 Alport Warrior Scott Liddell and his colleague Chris Cousins along with Andrea from Admire PR…

  • Alport Information Day 31 July 2021

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    Giovanni Gaetani
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    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 your questions. Register here https://bit.ly/3gzmvcs. The patient day follows a scientific conference, Podocyte 2021, where…

  • Next online workshop: ADAS and gene editing plus an Alport dog colony

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    Giovanni Gaetani
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    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 University and her team will present an overview of Alport syndrome in dogs, and of the…

  • Hearing workshop 23 June

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    Giovanni Gaetani
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    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

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    Giovanni Gaetani
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    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 28th-30th July, free of charge. Further details to follow.

  • Young adult session 18 March 7pm

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    Giovanni Gaetani
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    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 with our workshops and gain some useful skills and work experience – so difficult to…

  • Spotlight on Jie Ding’s Beijing lab

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    Giovanni Gaetani
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    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 YouTube channel here:

  • Volunteer role at Alport UK

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    Giovanni Gaetani
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    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. Flexibility, methodical and reliability required. If interested, please email Susie info@alportuk.org or call 01793 847264 The global…

  • Is Alport syndrome more common than we thought?

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    Giovanni Gaetani
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    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 Biobank and deCODE in Iceland, Moumita Barua’s genetics studies have identified that Alport syndrome may…

  • Cocoa drop-in

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    Giovanni Gaetani
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    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 and bring you up to date with the UK Covid-19 vaccination guidance for renal patients…

  • Transplantation

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    Giovanni Gaetani
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    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 to the meeting. Supported by clinicians and other Alport patients take this chance to ask…

  • UK vaccination for relatives of transplant/stage 5 dialysis patients

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    Giovanni Gaetani
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    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 vaccines. We have one of our trustees – Colin Baigent (an Alport and transplant patient…

  • Are Flozins a treatment breakthrough for Alport syndrome?

    Are Flozins a treatment breakthrough for Alport syndrome?

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    Giovanni Gaetani
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    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 of diabetes, SGLT2 Inhibitors/Flozins, approved for use in kidney patients, could be a treatment breakthrough…

  • Christmas Drop-In – Tues 1 December 7pm

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    Giovanni Gaetani
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    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

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    Giovanni Gaetani
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    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

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    Giovanni Gaetani
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    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 researchers. Funding is available to help with part-funding registration, travel and accommodation. We encourage all…

  • COVID-19 – Latest advice

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    Giovanni Gaetani
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    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

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    Giovanni Gaetani
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    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 or sponsor the next workshop, please email Susie Gear at research@alport.info. We particularly encourage the…

  • #fightingfailurechallenge – Sam Clarke

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    Giovanni Gaetani
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    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 rare genetic kidney disease that causes hearing loss, eye abnormalities and kidney failure. Throughout my…