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Supporting our international families

3/18/2026

We are pleased to confirm that Shadow Jumpers, a US-based non-profit organisation dedicated specifically to supporting individuals and families affected by photosensitive conditions, will be supporting our international XP community moving forward from Spring 2026.

Founded by people personally connected to rare sun-sensitivity conditions, Shadow Jumpers exists to create meaningful experiences, build community and help families live more fully despite the challenges of living with extreme light sensitivity. Their work focuses on practical support, advocacy and creating opportunities that improve quality of life for children and adults living with photosensitive conditions.

As part of Action for XP’s service transition, Shadow Jumpers has agreed to work closely with our international community to determine their needs moving forward and strive to fulfil that need in the months and years ahead.

They will also host our educational and practical resources on their own website moving forward and serve as a main point of contact for the international XP community we served, offering ongoing support, information and connection.

“We are incredibly excited to see where Shadow Jumpers take this next chapter for international outreach. Their commitment ensures that our global XP community will continue to have access to practical help, trusted information and a dedicated organisation that understands the unique challenges of living with a rare photosensitive condition. We believe this is a very positive development for the international XP community and we look forward to seeing them build on our legacy as they expand further internationally.” Nicola Miller, Action for XP

Shadow Jumpers say:

“The impact Action for XP has had on their community cannot be overstated. Their years of advocacy, support, and care created a lasting legacy that has touched countless XP families across the world. That work helped pave the way for other photosensitive organizations like Shadow Jumpers, and we are deeply honored to continue building on what they started. We look forward to working alongside our new global partners to ensure XP families continue to receive the support they deserve.” Craig Leppert, Shadow Jumpers

If you would like to learn more about Shadow Jumpers, please visit their website at www.shadowjumpers.org or you can contact them directly at: [email protected]

To be kept up to date on their programmes and initiatives please sign-up to their mailing list here: https://www.shadowjumpers.org/newsletter

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Action for XP to close after 14 years of supporting the global XP community

3/6/2026

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After 14 years of dedicated service to the xeroderma pigmentosum (XP) community, Action for XP announces that the charity trustees have formally voted on their intention to dissolve Action for XP.

Established in 2012 by Rebecca Stewart and Nicola Miller 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 and internationally. 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 enjoy their lives safely and to their fullest while living with XP.

Nicola Miller, co-founder says:

“It has been an immense and unquantifiable honour to contribute to the global efforts in supporting the xeroderma pigmentosum community. Like many rare disease organisations, we were born out of a personal catalyst, and in our case that was the diagnosis of my son Eddison (or as he is known by family and friends Ted). He put the Ted into Teddington Trust and was the inspiration and motivation in our continued Action for XP. Now, after 14 years of relentless efforts for others it is time for our family, who have been the driving force of the organisation, to take a much-needed break, and let others build on the legacy of work and progress we have created. We look forward to remaining connected and supporting from the sidelines while we seek to enjoy more fully the all too fleeting years with our own young families. Thank you to everyone who has followed our journey and supported our work and to our Trustees past and present who helped us along the way. It has meant more than you can know and you are forever in our hearts. With much love, Nicola Miller (co-founder)"

Supporting UK families

As part of the long-term strategic and sustainable future for XP services across the UK, transition of patient support will now move to the long-established UK based charity, Amy and Friends.

Amy and Friends are a charity supporting children, young people, families and carers affected by DNA repair disorders in childhood, including cockayne syndrome (CS) and trichothiodystrophy (TTD). They are committed to improving the lives of individuals affected by DNA repair disorders with compassion and through a family centred approach. Their network of dedicated staff, volunteers and expert medical professionals, provide practical and emotional support, information and education whilst promoting and engaging with groundbreaking research in the UK and internationally.

We are thrilled to announce that from April 2026 Amy and Friends will be extending their remit to include supporting the UK xeroderma pigmentosum (XP) community.

Amy and Friends say:

Amy and Friends is proud to announce that it will be taking over the UK care and support services previously delivered by Action for XP, ensuring continuity, compassion, and a strong future for individuals and families affected by xeroderma pigmentosum (XP) and related rare conditions.

This transition marks an important new chapter for the community. Amy and Friends is committed to building on the legacy established by Action for XP, while strengthening support networks, advocacy efforts, family connections and access to reliable information and resources.

“We are honoured to take on this responsibility,” said a spokesperson for Amy and Friends. “Our priority is to ensure that every individual and family feels welcomed, supported, and reassured during this transition. We step forward with deep respect for the work that has been done and with a clear commitment to continuity of care and community.”

Amy and Friends has long supported children and adults living with rare genetic skin conditions, including XP. By formally taking over these services, the charity aims to provide stability and renewed energy, ensuring that no family feels alone in navigating the challenges of a rare diagnosis. (Amy and Friends)

Supporting international families

At Action for XP, we are also mindful that a significant volume of our outreach is international and as such we are currently finalising a strategy for what we hope will be an equally smooth transition for our international families.

Further announcements will follow with details in due course.

Next steps

Although the charity Action for XP will formally close, our website will remain live as an important legacy information hub which will include:

information about understanding and living with XP
education and school guidance
step-by-step guides for applying for a Blue Badge, Disability Living Allowance (DLA), NHS travel grants and other financial support
information on UV protective clothing, UV light meters and protective equipment
XP clinic contact details and signposting to further support

For active ongoing support families can now reach out directly to Amy and Friends:

Website: https://amyandfriends.org
Email: [email protected]

Important

Please note that due to data protection laws we are unable to share our family’s contact details with Amy and Friends, therefore if you wish to be added to their mailing list, please sign up via the following link, which will mean they can reach out to you regarding their service provision:

Mailing list sign up

For further information and live updates please follow our social media channels over the coming days and weeks for important signposting on vital services. You can continue to refer to our website for signposting information: https://www.actionforxp.org/

Closing message from our Chair of Trustees, Dr Richard Barlow:

“After 14 years of dedicated service to the XP community, Action for XP is formally closing. As a person with XP myself, I will forever be indebted to Nicola and Rebecca and the incredible drive they have brought to the table through this cause. No doubt there are numerous other individuals in our community, many of whom reside around the world, who will feel the same. I would like to whole-heartedly thank the many persons who have contributed support to the organisation over the years in various forms and now to Amy and Friends who will be taking on part of the support role to the community.” (Richard Barlow - Chair of Trustees)

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Supporting our international families

Action for XP to close after 14 years of supporting the global XP community

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CLOSURE UPDATES

Supporting our international families

Action for XP to close after 14 years of supporting the global XP community

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Archives

Categories

​action for xp

Policies

action for xp