teddington trust

Staying out of the shade…

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Brick by Brick – Supporting Teddington Trust

We never know what calls and emails will come into our office, and recently we had one of our oddest to date! We were kindly being donated a LARGE quantity of LEGO compatible COBI bricks to use to raise funds for our work!

Now, all we had to do, was get our thinking caps on, to work out how we could use this for best return for the charity to help with our vital patient support and projects.

After much debate and brain storming, one of our close friends stepped in to offer assistance. Katrin has taken on the challenge to turn these bricks into fun novel items for sale, plus separating to sell as loose bulk bricks.

We also have a VERY special ONE OF A KIND, professionally built Sculpture which is available to buy as a stand alone item

See below links to the auction items and happy bidding!


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Lego planters.jpghttp://www.ebay.co.uk/itm/Kids-garden-planters-made-from-lego-compatible-building-bricks-/322459670730?hash=item4b141818ca:g:DYsAAOSwSlBY0YmF


You can view a full list of all auction items via this link, which includes bulk packs of individual bricks:


If you would like something you cant see, you can discuss your requirements with us directly support@teddingtontrust.com or everett.richard@sky.com

30% of all profits will be donated directly to Teddington Trust, allowing for time and storage costs.

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#BearsforRare is a long running charitable campaign launched in spring 2016 by registered charity Teddington Trust. The objectives of this campaign are to provide vital educational resources to patients affected by the ultra-rare condition of xeroderma pigmentosum, while rolling out a national in-school programme, delivering key messages on inclusion and rare disease.

“To bring public attention to the difficulties that those affected by rare disease face when accessing treatment and services, and given their aligned objectives, Teddington Trust were delighted to give their campaign name to SHIRE for this special one off day/campaign to launch their key white paper, bringing the patient voice to the forefront.”
Nicola Miller, Co-Founder Teddington Trust

To support the Teddington Trust #BearsforRare campaign visit

Or #BearsforRarepost a picture of you and your favourite bear on social media with the hashtag #BearsforRare #Bears4Rare – Text Donate – Text BEAR20 £5 to 70070



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Jeans for Genes supporting Xeroderma Pigmentosum

Jeans for Genes Award Teddington Trust a grant for children with Xeroderma Pigmentosum

TEDDINGTON TRUST are delighted to announce that  we have been awarded a grant from Genetic Disorders UK, the national charity that organises the annual fundraising day, Jeans for Genes Day.

This generous donation will come from funds raised on the day and will be used to fund a special Project Breakaway – Activity Day for children and their families affected by Xeroderma Pigmentosum

“The condition of XP can be an extremely isolating one, and this grant will enable us to bring families together to enjoy activities as a group in a fun and safe way, building friendships, confidence and making wonderful memories” . Nicola Miller, Teddington Trust


Xeroderma Pigmentosum is a rare genetic disorder that is characterised by the body’s inability to repair the damage to skin that is caused by ultraviolet light from the sun and most sources of artificial light. Children with xeroderma pigmentosum are 10,000 times more likely to develop skin cancer than the general population and so they must be covered completely at all times when they are outside.

Genetic Disorders UK’s Jeans for Genes Day is an annual fundraising event when school children and office workers wear their jeans in exchange for a donation to the charity. Although individually genetic disorders are rare, together they affect 1 in 25 children. This means that more than 30,000 babies each year are born in the UK with a genetic condition. Sadly, genetic disorders and their associated health problems mean that they are the biggest cause of death of children aged 14 years and under. Funds from Jeans for Genes Day are granted to specialised charities to provide care and support for children affected by genetic disorders.

Caroline Harding, the CEO of Genetic Disorders UK said: “We are delighted to be helping TEDDINGTON TRUST support children with the rare and complex condition of Xeroderma Pigmentosum. Our grant programme is open to all UK support groups and registered charities who work to improve the lives of children and families affected by genetic disorders.”

  • Jeans for Genes Day raises money for Genetic Disorders UK, a charity that provides much needed advice and support for individuals and families affected by genetic disorders. jeansforgenes.org
  • Jeans for Genes Day is an annual fundraising event held in September. School children and office workers are encouraged to wear their jeans for the day in exchange for donation. jeansforgenesday.org
  • Genetic disorders are caused by an alteration in DNA. This may mean that either a gene or several genes are missing, repeated or in the wrong order. Altered genes can affect a child’s senses, movement, ability to learn or appearance.
  • TEDDINGTON TRUST is a Jeans for Genes Day 2017 grant charity. They will receive a grant towards provision of a children’s breakaway/activity day.

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Meet our new Ambassador and volunteer Patient Services Coordinator (Midlands Region)

We are pleased to announce the latest volunteer member, Rehana Kauser who joins the Teddington Trust Team, as an official Ambassador and Patient Services Coordinator for the Midlands Area.

Rehana is the mother of 3 beautiful boys and lives in the Midlands area. Her oldest son, now aged 17 was diagnosed with XP aged 8 years old.

rehanaWe have many families located across the Midlands, of all ages and Rehana is excited to join our team to help us coordinate patient services across this region, allowing us to to effectively deliver high quality patient support direct to families.

Rehana will also be helping us bring a range of activities to this region to better connect XP families from within the region with other families across the UK.


Engaging patients and families directly, is a very important aspect of our work and allows us to ensure that our projects meet the needs of all. We are very proud to have an XP child, adult and now a parent represented in our Ambassadors.

We have a wonderful two years ahead with much in the planning and so it is an exciting time to join our volunteer team and have the opportunity to become directly involved.

If you would like to find out how you can be more formally involved in the work of Teddington Trust, drop us an email to discuss. Contact, Nicola on support@teddingtontrust.com