On May 25th 2023, Eddison (aged 11) was invited, along with other inspirational children from his region to attend the Try Angle Awards ceremony. Here he was awarded the Try Angle Community Action award, which was given in recognition for his considerable youth advocacy work in the field of rare disease, and in raising awareness for the ultra-rare condition, xeroderma pigmentosum. The award was chosen by a panel of judges who were greatly impressed by Eddison's achievements.
I am exceptionally pleased to hear of Eddison's award in recognition of his youth advocacy work! Eddison has done some tremendous work raising awareness for rare diseases at RARE Youth Revolution. He has facilitated interviews through our RARETalks series, written articles in his regular column, Eddison Explores and conducted Rare Quiz and Mythbusters sessions with his brother Raife, at CRDN's bi-annual RAREfest. I am pleased to see his achievements have been acknowledged and cannot wait to see what he brings to us next!
Chelsea Wong, RARE Youth Revolution, youth coordinator
Eddison is a fabulous young man who has done much to raise awareness for other people with XP and their families, not least being the inspiration behind the little Ted series. His approach to daily life is exemplar of the resilience we all strive towards. We look forward to seeing more of Eddison and his fantastic brother Raife as they approach the next chapter of their life.
Dr Richard Barlow, Chair of Trustees, Action for XP
We are very proud of all that Eddison does to demystify living with XP. To say he was chuffed with his award would be an understatement, and it is wonderful for us as his parents to see him recognised in this way. He does such a lot to put himself out there in the hope to inspire and encourage others and he is the direct inspiration to so much great work that had come from his diagnosis. We are eternally proud of him.
Eddison's mum and dad, Nicola and Andrew Miller
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.
You can find XP and Me HERE. https://bit.ly/XP-And-Me
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
Dear UK families,
This letter has been sent to you to explain the new system for claiming reimbursement for costs incurred when attending XP multi-disciplinary team appointments at St Thomas and Guys Hospital at the Rare Disease Centre, London. The new system will come into effect as of January 2023.
Over the last year, Action for XP has evaluated total expenditure across all projects supporting the XP community. This has highlighted that, in addition to provision of photoprotection such as hats, gloves and UV film, the most significant cost to the charity is travel and accommodation for attendance of the National XP Clinic.
It is predicted that by the end of the year nearly £25,000 will have been spent on these travel and accommodation costs alone. The amount claimed ranges from around £50.00 to in excess of £600.00, with the average cost per patient being £480.00. This, coupled with late notice requests, incurring higher costs and the operational difficulties created for our volunteer team, means that this situation is not sustainable if we are to protect the charity and continuation of all of our vital services.
Although there is some funding (circa £3,500) from NHS England this is unlikely to increase significantly and so, given the rising costs of travel, accommodation, and applicant claims it has been necessary to streamline the claim process, review eligibility and review what is fair and reasonable for our families in the current climate.
This week, a new system has been introduced (which supersedes previous arrangements) aimed solely to support those individuals/families who:
Families/individuals will now be responsible for booking travel arrangements themselves and apply for the grant after their clinic appointment.
Subject to meeting the eligibility criteria and being in receipt of valid documentation, you can apply for a travel grant via our online application form for reasonable travel, and in some circumstances, accommodation. The maximum awarded fund will be £250.00 - dependent on distance from home to clinic. Payments will be made with 3-5 working days of successful application.
Attached is a FAQ sheet which should answer all your questions and guide you through the new process, it also contains useful information about other grants available, for example the HTCS. https://www.nhs.uk/nhs-services/help-with-health-costs/healthcare-travel-costs-scheme-htcs/
This decision has not been made lightly and has been taken following discussion and with full knowledge and support of the clinical team.
With best wishes
Action for XP team
Dr Richard Barlow
Chair of Trustees for and on behalf of Action for XP
Senior Dermatology Registrar – West Midlands, UK
Download our new Medical Travel Financial Assistance Advice guide HERE