Welcome to PKS UK. PKS UK is a UK charity aimed at helping all people involved with Pallister-Killian Syndrome. We are a volunteer-led charity based in the UK. We currently have no paid staff and are run by a dedicated team of trustees who are all parents or siblings of someone with Pallister-Killian Syndrome.
For parents and other family members of loved ones with PKS you can expect to learn about PKS whilst interacting with other families from around the world. Doctors and caregivers can expect to educate themselves about PKS by reading the latest research and connecting with medical professionals who have seen the syndrome first-hand.
Our primary aims are:
Support
We help support people with Pallister-Killian Syndrome and their families and carers. We also provide support to professionals working with a person with PKS who may have met very few or no other individuals with PKS in their professional career.
Education
We aim to educate and raise awareness of this rare neurological condition and the issues that surround it. As with many such conditions, PKS is not just about a simple diagnosis, but requires parents and carers to adapt as situations change and the individual grows older. We aim to provide education and raise awareness within the medical community to ensure early diagnoses of children with PKS.
Research
We aim to assist organisations and individuals in the UK and overseas in carrying out research into PKS and its many related areas.
Trustees:
Our trustees are all volunteers with direct experience of Pallister-Killian Syndrome as parents of a child with PKS. We are also supported by experts who are able to answer and advise on more complex questions in relation to PKS.
- Liz Patterson: Liz is Chairperson of PKS UK. She lives in Buckinghamshire and is mum to 4 children including Sam who has PKS and was born in 2019.
- Natalie Slayford: Natalie lives in Cambridgeshire and is mum to 3 children including Gracie, born in 2016.
- Kerry Travis: Kerry lives in Norfolk and is mum to 3 children including Sarah, born in 2008.
- Emma Caple: Emma lives in Bristol with her famly and is mum to Elliot who was born in 2014.