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Teddington Trust and the XP Support Group to join forces to strengthen support for the xeroderma pigmentosum community

Teddington Trust and the XP Support Group to join forces to strengthen support for the xeroderma pigmentosum community
Teddington Trust and the XP Support Group to join forces to strengthen support for the xeroderma pigmentosum community

We are excited to announce that from the summer of 2022 there will be one single charitable organisation to represent and support people with xeroderma pigmentosum (XP) within the UK. This will be formed from new and current board members of the Teddington Trust (TT) created 10 years ago by sisters Rebecca Stewart and Nicola Miller, and the XP Support Group (XPSG) which was founded by Sandra Webb and has been in existence for two decades.   Coming together to create a single group with a brand-new identity will enable us to more effectively and efficiently provide the services which are important to the community while allowing us to grow to meet the changing needs of that community.

Over the years, many people with and without XP have done a tremendous job to raise awareness and funds for TT and XPSG.  We know that the tenacity and determination of such people will help to forward this cause for years to come.  As such, we will be looking to our community and collective followers to help drive the look and feel of the new organisation for the future, including upcoming workshops to help establish our new logo design and brand identity.

While providing general support and raising awareness remains at the heart of our constitution, we want to learn what other areas need furthering and how this can be achieved. The new organisation will continue to support the National XP Clinic in London, collaborate with sister organisations around the world and provide practical and emotional support for individuals and families affected by XP.

Additionally, we will be working more closely with you to explore what we can focus on moving forward. Areas identified thus far include improving understanding of the neurological impacts of the condition, supporting young people as they progress into adulthood and establishing bereavement services. We also hope to create an even stronger sense of community through social networking and face-to-face or virtual events as directed by you. We will continue to provide the essential support we offer now, including photo-protective equipment, advice and guidance on living with XP and navigating the social care and benefit system, and the other projects important to our community such as our breakaway programme and Little Ted resources.

Richard Barlow, Teddington Trust’s chair of trustees: “As a patient myself, I’m very much looking forward to working more closely with individuals directly and indirectly affected by XP. I welcome and encourage any suggestions and ideas on how better to cater for people and families with XP. This will allow the new organisation to target those areas we may have otherwise not considered, as well as building on the fantastic progress of the XPSG and TT since their inception.”

Nettie Dearmun, XPSG Chair of Trustess:  “At the heart of these changes is  the desire to offer  continuing support  to the XP Community,  The aim is to build on the legacy of the XP support group and effect a smooth and seamless transition so that  you won’t be able to see the join.  This is possible because the two charities have very similar aspirations. I would like to thank Sandra Webb for her commitment to patients and families with XP  and feel confident that XP support is in excellent hands as I give  the baton to Richard to take the charity forward in the future as chair. I look forward to being part of this transition and continuing to serve on the new board.”

Nicola Miller, Teddington Trust, co-founder: “Post COVID-19 the landscape for rare disease charities is incredibly tough, but in many ways our services have never been more important or needed. Now is the ideal time to take stock, reflect and engage with our community to ensure that we remain sustainable and relevant for the families facing the challenges of life with XP both now and in future generations. Over the coming weeks and months, the outgoing boards of both TT and XPSG will be working hard with a new interim board to ensure that a new future, building on the legacy of over 30 years of XP support is a secure one fully reflective of the needs and priorities of the community both at home and abroad that we have the honour to serve.”

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