• We are very grateful to everyone who has gifted us their My Story.  The following stories give you a flavour of the variety of journeys with MEN1 that different people experience.  In addition, scroll down for our three patient story films produced in 2021.  We hope you find them interesting, useful and maybe even inspiring.  Writing about your experiences of living with a rare disease can be cathartic.  If you would like to write about your journey, please download our template and send it to Jo Grey at the AMEND HQ.  Thank you

  • Siobhan

  • Laura

  • Gill

  • Andy

  • Callum

  • Anne

  • Erin's Poem, 'Ode to MEN1'

  • Harry (aged 7) - by mum, Christine

2021 MEN1 Patient Experience Films

  • MEN1 - My Story: Emma

  • MEN1 - My Story: Steph

  • MEN1 - My Story: Kevin