Measuring impact—serving a global XP community

As we draw near the end of 2023, what better time to reflect on our impact...
​ 

Letter from our Chair

The past 12 months have flown by; July 2023 marked one year of Action for XP. Nicola, Nettie, Rebecca and regular volunteer Eunice, continue to make great impact through direct patient support both nationally and internationally. The XP clinic in London continue to deliver excellent care to our patients and their families affected by XP, including myself. We look forward to continuing and building on this working relationship in the years to come. 
​
As our community grows, we have had to enforce some changes to our services to ensure sustainability of the charity. We thank our community for their patience and understanding in these matters which allows us to deliver the core services to greater numbers of people and ensure long-term continuation of Action for XP. 

This year has also seen the launch of a wonderful comic focusing on the neurological aspects of XP and the transitional phase of childhood and beyond. We thank the team behind this based in Dundee and beyond. 
​
Lastly, a heartfelt thank you to all the inspirational individuals who continue to fundraise and raise the profile of XP within the UK and abroad. We are still not out of the post-pandemic woods which makes everything considerably more challenging and we very much recognise the great efforts of those people who continue to persevere and set leading examples for the rest of us. 

Richard Barlow
Chair of Trustees, Action for XP

Download 2023-2023 Report by clicking image above.

The Future

As we look to the year ahead there is so much more we want to achieve. 

With an ever-increasing workload putting considerable pressure on our volunteers we recognise the need to address this. Our hope is to be able to bring some part-time staff into the organisation in the year ahead, which, will help alleviate these pressures and allow us to deliver more for our families.
​
Our priorities for 2023-2024 will include the following:

• Recruit a new fundraising officer to help us take a more planned and strategic approach to raising funds and securing our financial sustainability 
• Recruit support on day-to-day operations to alleviate pressure on existing volunteers
• Develop phase 2 of the teen comic project and expand youth engagement
• Continue to build on our monthly virtual get togethers 
• Continue engagement with the community to develop a calendar of important in-person events to suit the needs of our diverse community
• Build on the success of the pilot project and secure funding to roll out our Rare Minds counselling programme fully 

Download our April 2022 - Marsh 2023 Impact report HERE:​

Button Text

To support our valuable work please
DONATE via Just Giving or PAYPAL