Putting you in the heart of the rare community – Action for XP
Estimated reading time: 5 minutes
Patient advocacy groups deliver their top three unmet needs and main asks of industry to best serve their rare community. This week’s insights come from Victoria Roe, fundraising and events officer, Action for XP
Action for XP is the only UK charity dedicated to supporting individuals and families affected by Xeroderma Pigmentosum (XP), a rare genetic condition that makes people extremely sensitive to ultraviolet (UV) light. Even the smallest exposure can cause life-threatening cancers and damage to the eyes and skin. Living with XP means taking extraordinary precautions every day, and we are here to ensure that nobody faces these challenges alone.
Our mission is to provide vital support, guidance and a strong sense of community for those living with XP. We are committed to raising awareness of this rare condition, empowering families with practical help and emotional care, and championing the needs of our community. Alongside this, we work to fund research that can improve lives today and offer hope for the future. Together, we aim to build a safer, more inclusive world for everyone affected by XP.
Xeroderma Pigmentosum (XP) is a rare autosomal recessive genetic disorder in which the body lacks fully functioning DNA repair mechanisms. As a result, individuals with XP are extremely vulnerable to ultraviolet (UV) light, making them around 10,000 times more likely to develop skin cancers than the general population. There are seven complementation groups (A-G) plus a variant (XP-V). Around a third of those affected also experience neurological, auditory or visual problems. Because there is no cure, management hinges on rigorous photoprotection, frequent skin surveillance, neurological support and educating family, schools and the wider community.
What are your top three unmet needs or main asks of industry to best serve your rare ecosystem?
One of our biggest unmet needs is sustainable funding for the core costs of running our charity. As a small organisation supporting such a rare condition, we are often overlooked by grant funders. The reality is that, because XP affects only a small number of people, our “reach” doesn’t look as large as some other charities, even though the difference we make to our community is life-changing. Every person we support faces extraordinary challenges, and our work is often the only lifeline they have. Without money for staff, systems and day-to-day operations, we can’t continue to deliver the essential services our community relies on. Larger charities may be able to absorb gaps in funding, but for us, every penny matters. We need industry to recognise that rare disease charities are not about numbers, but about depth of impact. For the families we serve, our support isn’t “nice to have” it’s essential.
Another key ask is support for research and development into XP. At the moment, very little research is taking place, simply because we are such a rare condition. That rarity means we are often forgotten, but for those living with XP, research could be the key to safer, longer, healthier lives. We need industry partners and researchers willing to look into treatments, interventions or even practical innovations that can improve daily life. Without this, families continue to live with fear and uncertainty, managing symptoms as best they can with the limited resources available. We understand that rare conditions don’t always attract the same attention as more common diseases, but that is exactly why we need industry to step up. Collaboration could make a huge difference, whether that’s research into better protective measures, improved monitoring or even potential therapies. We don’t want to be invisible, we want our community to have the same hope for the future as anyone else.
Finally, we need policy support. At Action for XP, we are the only organisation in the UK providing free visors, gloves and UV protective clothing to people with XP. These are not optional extras, they are life-saving essentials. Without them, our community cannot safely step outside or even manage day-to-day life. Yet they are not available on the NHS prescription service, meaning families are left without access unless we step in. For a small charity, providing these items is a huge financial and logistical commitment, but we do it because the need is so urgent. What we want to see is change at a policy level, recognition that these protections are medical necessities and should be freely available, just like other essential equipment or medication. Rare communities like ours, need advocates within industry and government to push for these changes. We can’t do it alone. Policy support would bring fairness, dignity and safety to our community.
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