Our mission
PMSF UK exists to provide a supportive, inclusive community for everyone who has, or knows someone with, Phelan-McDermid Syndrome.
The Phelan-McDermid Syndrome Foundation UK (PMSF UK) is a registered charity in the United Kingdom (charity no. 1157423). There are over 400 families with PMS registered in the UK and Ireland, and almost 5,000 people registered worldwide.
Our charitable purpose
This is our purpose as registered with the UK Charity Commission:
The relief of needs of people who have been diagnosed with Phelan-McDermid Syndrome (chromosome 22q13.3 deletion) and their families, in particular but not exclusively by providing support, family days, information, financial grants for different therapies for the person with the Syndrome and research endorsed by the international Phelan-McDermid Syndrome Foundation.
In practice, that means
- Family Days and regional get-togethers
- Awards towards therapies, equipment, activities, siblings and carers' breaks
- Clear information, from what PMS is to first steps after a diagnosis
- Supporting research endorsed by the international Phelan-McDermid Syndrome Foundation
Our constitution
PMSF UK is a Charitable Incorporated Organisation (CIO) with a foundation model constitution. If you would like a copy, email info@pmsf.org.uk.


