• This section is a work in progress, so do check back from time to time.   If you would be interested in helping us to develop these, then please do contact AMEND/PPSUK CEO, Jo Grey.

    Adolescence can be difficult time, not least when you are juggling a rare disease alongside everything else that’s going on in your life.  If you’re going to be moving hospitals, going to university, heading off for an adventure in the big wide world, or simply trying to get your head around friendships and relationships, then hopefully there’s something for you below.

    If there are any other topics that you’d like us to tackle, then please do let us know!