• Adolescence can be a 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, including our MEN Youth WhatsApp Groups, launched in spring 2021.  Other useful videos and links can be found towards the bottom of the page.

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

Young People's Experience Films

  • Diagnosis: Megan & Molly

  • Surgery: Claudia

  • School: Sofia

  • University: Joel

  • Relationships: Sarah

  • Travelling: Cameron

  • Work: Brad

  • Group Discussion: Changes

  • Group Discussion: Diagnosis

  • Group Discussion: Support

  • How Can I Join In?

    We will shortly have two private WhatsApp Groups for our young adults that are moderated by two Youth Leaders (who will be trained and police-checked) for:

    1. ages 13-17 years (permission required from a parent who is a member of AMEND)
    2. ages 18-30 years (membership of AMEND required)

    If you’d like to join one of the Groups, check out our webpage.


  • What not to say to someone with MEN