How can we help you?

Whether you are newly diagnosed, an existing patient, or a friend or family member of someone affected by Xeroderma Pigmentosum please contact us to find out more about how we can assist individuals and the wider XP community. Or, if you have some useful guidance, links or resources to benefit XP patients please get in touch so we can collaborate - knowledge shared is knowledge gained!

"A candle loses nothing by lighting another candle" Father James Keller
"...the night, for then you see that's when I am truly free." Imagine by Rebecca Stewart

Patient support & family liaison

Working in partnership with the XP Support Group (XPSG - UK) Teddington Trust offer patient and family support and guidance, which includes the following:

  • responding to patient & family enquiries
  • producing & providing new patient information
  • producing and disseminating education & wellbeing programmes
  • handling patient grant applications on behalf of the XPSG (funded by XPSG)

All enquiries to support@teddingtontrust.com

See www.xpsupportgroup.org.uk for details of XP camps in the UK and Internationally

Education

Teddington Trust run a bespoke education programme for young XP patients globally. All children diagnosed with XP and aged 0-12 years are eligible to benefit from this, the Little Ted book & bear project.

We have pledged to send one of our Little Ted packs to every eligible child worldwide made known to us FREE OF CHARGE. If you know an eligible child please see our Little Ted page for full details on the pack and how to obtain one.

We are also developing a schools awareness programme, so if you would like to contact us about running this programme within your school please contact us.

All enquiries to support@teddingtontrust.com

UV protection

We are currently able to provide the following services in relation to UV protective equipment:

  • provision of UV blocking film for face protecting visors/hats
  • provision of free legionnaires hats for children
  • provision of free UV protective gloves for children
  • guidance on UV blocking clothing standards and suppliers

For protection of patient homes and vehicles, grants are available, subject to funding, via the XPSG. We can assist you in making a formal application for these grants which are determined on an individual case by case basis. 

All enquiries to support@teddingtontrust.com 

Free hats and gloves are provided in collaboration with the German support group and are subject to funding at time of request.

www.xerodermapigmentosum.de

Special projects

In addition to assisting with education and health through our support and protection services we have a number of ongoing special projects which look to address the issues of life quality and general wellbeing


You can find out more about these projects at the following pages:

Useful Quick Links