Registered charity no. 1157423

About PMS

Phelan-McDermid Syndrome is a rare genetic condition. Here you can find out what it is, read families' own stories and learn about research.

A father and daughter sitting on the grass at the Family Day

In this section

  • A toddler and a young woman doing an activity at a table

    What is PMS?

    A plain explanation of the genetics and the most common features.

  • A teenage boy with his parents, smiling outdoors

    Family map

    How many families live in each region, and who your regional rep is.

  • A mum and dad with their two young sons

    Family stories

    Parents and carers write about sleep, speech, school, work and more.