Our Mission

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. 

The promotion of inclusivity, diversity, equality, and awareness, operationally and across our activities.​
Download our 'handy to have' ​Contact Directory here
Hi, I’m Dave Cornthwaite and proud Patron of Action for XP since 2017. Personally, and professionally, I enjoy the good things that come from saying “yes”. I’m an adventurous doer, community creator, keynote speaker, filmmaker, author and I run a campsite too!
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In between long distance journeys without motors I wear a few hats. Alongside hosting a podcast and speaking to audiences around the world about adventure, positive mindset and community building, I run a social enterprise called SayYesMore whose voluntary team run hundreds of free outdoor events each year around the UK.

My wife Em and I are also in the early days of creating a renewables-powered campsite in Lincolnshire where alpacas roam alongside converted buses and a woodland hammock village. It's called the Big Sky Hideaway. 

My mission is to use adventurous stories and ideas to create spaces, events and opportunities to encourage and empower. This passion led to the co-creation of the BIG Book of YES book series, proceeds of which fund important projects for Action for XP. Three books down and this series to date has funded many families to attend Action for XP sleepover camps where the XP community can enjoy their own adventures in a safe and nurturing way. Understanding well the health and well-being benefits of the great outdoors I am passionate to use my voice and platform to help elevate the voices of those who cannot so readily access and these freedoms, and to lend my support to the xeroderma pigmentosum community.

Our Team

Janette Mannell

Operations Officer
​[email protected]

Victoria Roe

Fundraising and Events Officer
[email protected]

Our Board of Trustees 

Dr Richard Barlow

Chair
As chair of the Board of Trustees, a dermatology doctor and a person with xeroderma pigmentosum I would like to think I can see this condition from both sides. This places me in a unique position with which I want to help carry forth the future of Action for XP.

Nicola Miller

Co-founder & Secretary
As a mum of a son with xeroderma pigmentosum I know first-hand the challenges that families face living with a diagnose of XP. I am passionate about ensuring that regardless of life stage or health prognosis, all of our community are able to live their best lives and as such I am the Trustee responsible for delivery of our support and information services. My role is to ensure that everyone who needs us has access to a supporting shoulder and a wealth of relevant and current information to help them navigate the life challenges presented by XP. I also oversee general operations of the charity, ensuring project relevance and delivery.

Rebecca Stewart

Co-founder & Treasurer
As the charity’s financial controller, I ensure that as an organisation we can realise projects that make a difference to our community. As an active trustee I love getting to know our families and I am excited for the future of Action for XP as we look to actively engage in research activities in addition to our support programmes.

This page is currently under construction

Our Trustees
Richard Barlow - Chair of Trustees
Nicola Miller
​Rebecca Stewart
Rory Traynor
Wilbur Stewart
Natalie Lorimer
Nina Liu
Youssef Jebari

Our Volunteers

Farah Akhtar

Family Support Volunteer
Attending a medical setting can be daunting for both new and returning families. It can be a long tiring day for adults, children and their parents and often with difficult health news to digest. I have first-hand experience of this when visiting with my grown-up son. I also have over 10 years of experience in SEND, and supporting the SEND community, with roles as a teacher, support worker and senior learning assistant. It brings me great pleasure to be able to offer support directly to families within the clinical setting as a representative for Action for XP, where I can offer emotional support and sign-posting to our services, harnessing my skills.

Eunice Gelati

Family Support Volunteer
As a grandmother to a child with XP, I am pleased to support Action for XP in helping to keep our children and adults safe with vital UV protection. I am responsible for managing our stock of UV gloves and hats as well as making up the visors and dispatching these to anywhere in the world where they are needed. I also manage the shipping of our Little Ted education resources.

Emily Robertshaw

Research Volunteer
Ensuring that individuals and families have a seat at the table in research is important for families like mine, affected by XP—hope helps us all keep moving forward. It is important that as a service and charity we understand what we do well and where our gaps are in need. Using my experience working in the NHS and my lived experience as a parent to a child with XP I support Action for XP by sitting on their research panel, and taking the lead on developing service evaluation tools.