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.
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.
A number of the teenagers and young adults also contribute questions and ideas to our closed facebook page: Alports Warriors. If you know of anyone who would like to join in the discussion on this page, please email us at firstname.lastname@example.org.
We have a twitter page which can be accessed by all.
Our page for tweets 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. Alport_UK