• 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 MEN2B that different people experience.  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

  • Jess


  • The following films were produced in early 2019 to raise awareness of MEN2B, to encourage earlier diagnosis, and to inform and support other families affected by the syndrome.  We cannot have achieved this work without our incredibly brave film star volunteers – and they are all that – stars!

    Funded by AMEND and a grant from The Society for Endocrinology.

  • MEN2B and Me: Asher

  • MEN2B and Me: Ethan

  • MEN2B and Me: Kristina