We initially sent out multiple questionnaires to individuals with XP aged 16–35 years to help understand what motivated them to get involved in an XP support group. This information will be useful for the XPSG moving forward, as it will allow them to tailor activities in order to meet the needs of a wider range of affected individuals. To compliment these insights, we also devised a helpful ‘social media handbook’ to help the charity engage with potential new members and reconnect with their existing supporters.
Some of us also went along to the annual XPSG ‘Owl Patrol’ – a camp for individuals with XP where they can meet other affected individuals and take part in various organised activities. This year’s theme was Harry Potter and included a trip to the Harry Potter Studios! This was a fun opportunity to get involved with the XPSG and it was a great insight into the support the charity provides.
We have also been working on developing an animation and an infographic to be shown in clinic waiting rooms, with the aim of encouraging more individuals with XP to get involved with the XPSG. In addition to this, we have been working alongside the charity to develop new branding to freshen up their current materials, such as the monthly newsletter.
At the Marlow Christmas Market, we managed to raise £500 by selling goods such as delicious homemade cakes and the XPSG Christmas cards. We have more fundraisers planned to support this fantastic charity throughout 2019.
If you want to learn more about XPSG and what they do, you can visit their website at: http://xpsupportgroup.org.uk/