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About us
Who we are
Action for XP is a registered charity that offers support and guidance to individuals and families affected by the ultra-rare DNA repair disorder, xeroderma pigmentosum.
We do this through our core patient liaison service and equally important to us, our ongoing special projects which look to improve quality of life and general wellbeing by delivering practical solutions and promoting international collaborations and community building.
Our culture and values
To provide a comprehensive support network for individuals and families affected by the ultra-rare disease, xeroderma pigmentosum (XP), providing equitable access to our charitable services throughout the UK. Providing both practical and emotional support to aid the improvement to the quality of life for individuals and families affected by XP, through all life stages of living with the disease.
To further conditions for families in underserved regions internationally by engaging in proactive collaboration and knowledge sharing with our peers internationally.
To further scientific understanding of xeroderma pigmentosum and work with the international scientific community to progress research and communicate that research to our community.
To promote education and awareness both within the XP community and externally within the professional community and general population.
Equality, diversity and inclusion policy
We actively promote inclusivity, diversity, equality, and awareness, operationally and across our activities and engagement with our beneficiaries, funders, supporters and collaborators.
