Welcome to
Action for XP's Legacy Page
After 15 years of dedicated service to the Xeroderma Pigmentosum (XP) community, Action for XP has announced that the charity trustees have formally voted on their intention to dissolve Action for XP.
Established in 2012 by Rebecca and Nicola and achieving charitable status in 2015, Action for XP was created to provide support, practical guidance and a sense of community for families affected by XP across the UK.
Over the years, the charity has worked closely with families, clinicians and schools, raised awareness of this rare genetic condition, developed educational resources including the Little Ted books, and provided grants and practical support to help people live safely with XP, creating over a decade of lasting impact.
See press release for more information:
Established in 2012 by Rebecca and Nicola and achieving charitable status in 2015, Action for XP was created to provide support, practical guidance and a sense of community for families affected by XP across the UK.
Over the years, the charity has worked closely with families, clinicians and schools, raised awareness of this rare genetic condition, developed educational resources including the Little Ted books, and provided grants and practical support to help people live safely with XP, creating over a decade of lasting impact.
See press release for more information:
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What Happens Next?From the 1st April 2026, support previously provided by Action for XP for our UK families will be transitioned over to Amy and Friends.
You can reach out to Amy and Friends via the links below. |
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What Happens Internationally?From the 1st April 2026, families outside of the UK (globally) can now access support direct from Shadow Jumpers.
You can reach out to Shadow Jumpers via the links below. |