London, UK 28th February 2023 – Today Action for XP, in collaboration with the University of Dundee’s Scottish Centre for Comics Studies and the teen XP community launch a new resource to support and empower young people with xeroderma pigmentosum (XP)
Co-creation – a vital strategy for successful patient and peer education
Working in collaboration with the Scottish Centre for Comics Studies at the University of Dundee, and a focus group of young people and their parents, Action for XP believe that engaging educational tools make an important difference in changing attitudes.
Today sees the launch of the first phase of this project. The XP and Me comic includes the first three themes with many more planned. These initial themes cover “information on XP”, “what XP is and what it isn’t” and “neurology and XP”. The comic was developed by a team that includes Professor Christopher Murray and Dr Megan Sinclair, with artwork by comic artist Vanessa Cittadino.
A project that plans for the future
With more themes to follow and translations planned this resource will be one that will continue to support this young XP community as they navigate life living rare.
About xeroderma pigmentosum
Xeroderma Pigmentosum (XP) is an ultra-rare genetic condition characterised by an extreme sensitivity to ultraviolet radiation (UVR) which affects less than 150 patients in the United Kingdom and equally low numbers around the world.
Patients with XP lack the DNA repair mechanism to repair damage caused to the skin by exposure to ultraviolet (UV) light, in particular UVA and UVB and are at a 10,000-fold increased risk of developing skin cancer than the general population, often from at a very young age. In addition, around 30% of people with XP also develop neurological abnormalities which can range from learning difficulties, hearing loss and eyesight problems to loss of gross motor skills and mobility.
For more information visit www.actionforxp.org For more information about the educational comics produced by the Scottish Centre for Comics Studies visit www.scottishcomicstudies.com/public-information-and-educational-comics/.
To arrange an interview with Nicola Miller or Richard Barlow please contact Rebecca Stewart on Rebecca@actionforxp.org
This project is a in collaboration between Action for XP and the University of Dundee’s Scottish Centre for Comics Studies.
The project is joint funded by Action for XP and the National Lottery Awards For All Scotland