alport uk

for teenagers and young adults

Young Adult Workshop

University of Manchester’s Innovation Centre was the venue for the Young Adult workshop. Professor Rachel Lennon’s lab at the Wellcome Trust Centre for Cell-Matrix Research gave the Alport families a tour of their labs and explained the research they are doing on Alport Syndrome. The young adults and lab researchers together then used images from the lab to design and make their own t-shirts. The young adults interviewed some experts from the lab and via Skype to create four short videos to explain topics such as ‘know your numbers’, current research in Alport Syndrome, women and girls with Alport Syndrome and what its like living with Alport Sydrome.

Thank you to Cerri Harrop, Kory Stout and illustrator Eleanor Beer for helping produce the videos. There was also time to do a Tree Top Trek at a park in Manchester.

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Thank you to our inspiring patient and film maker, Sam Clarke and ‘Scrap the mask’ for making this thought-provoking video to share what we do at Alport UK to engage and inspire patients in the exciting and vital research on Alport Syndrome being done by Professor Rachel Lennon and her wonderful team.

Video of the event Manchester Teen Event Video

‘top tips’

At our information days, such as The 1st  Alport Information Day in London, we run breakout groups for teenagers and young adults. This video was written, filmed and edited by the group on the day. It is ‘top tips’ for young people living with Alport Syndrome.

view online

The outcome of some of teenagers and young adults getting together and putting a clip together of what its like to live with Alport Syndrome.  Some tips, pictures and facts.

How To Look After Your Kidneys

The Alport Community


facebook-logoA number of the teenagers and young adults also contribute questions and ideas to our closed facebook page: Alport Warriors. If you know of anyone who would like to join in the discussion on this page, please email us at or search online for Alport Warriors and ask to join. Our Facebook page handle is @alportuk.


We have a twitter page which can be accessed by all. twitter

Our Twitter handle is @alportuk.


At our recent Alport Information Day which was held in Birmingham a number of our teenagers got together for a break out session – they came up with and designed an Instagram page.  Our Instagram handle is @alportuk.

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