Health, disability & well-being

Funding level: Up to £1,000


The Phelan-McDermid Syndrome Foundation UK (PMSF UK) is a registered charity in the United Kingdom. PMSF UK provide a supportive and inclusive community for those who have or know someone with PMS. A Family Day gives those with PMS and their families the opportunity to come together to meet other families in the same situation and share knowledge and support.

We have had a fantastic Family Day in North London in May 2015. It was attended by almost 250 people including 53 families with children or young adults with PMS from 6 countries.

It was a great opportunity for all families to get together (including extended family and carers) and spend time together. Families shared stories and experiences and practical information. These days together are vital for the small community of PMS individuals and we would like to hold another Family Day in 2017.

Project Video

Phelan-McDermid Syndrome Foundation UK

There are just over 130 families who are diagnosed with PMS in the UK & Ireland. All people with PMS have difficulty communicating, many are non-verbal and most have low tone in their limbs. All people diagnosed with PMS need additional care to support their daily lives.

Location: London