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Action for XP
Приєднався 21 бер 2016
Action for XP (SCIO) is a registered charity (ref SC045465). We provide support and guidance for the xeroderma pigmentosum (XP) community through the creation, funding and implementation of a range of health, education and well-being projects, along with providing a dedicated patient and family liaison service. This channel is formed to communicate important XP related messages, themes, guidance and inspiration to our XP community, supporters and followers.
www.actionforxp.org
www.actionforxp.org
Little Ted goes... on HOLIDAY
Going on holiday when you life with the ultra-rare condition of xeroderma pigmentosum requires lots of planning. But as Little Ted and his mum show us, "everything is possible, if we plan and prepare"
Переглядів: 23
Відео
Little Ted goes... to CLINIC
Переглядів 29Рік тому
Living with a diagnosis of the ultra-rare condition of xeroderma pigmentosum requires lots of medical monitoring. Little ted shares how his mulit-disciplinary team look after him at the National XP Clinical Service.
Baby Roo... You're Special Too
Переглядів 30Рік тому
Being a sibling in a family affected by rare disease can be challenging, but it it important to remember just how special these super siblings are too. Baby Roo shares his story as a sibling with a brother living with the ultra-rare condition, xeroderma pigmentosum.
Little Ted Sun and Moon
Переглядів 31Рік тому
Learn about living with the ultra-rare condition, xeroderma pigmentosum through the eyes of Little Ted
Teddington Trust: Developing therapies for XP patients: a conversation with CLINUVEL-July 2021
Переглядів 3092 роки тому
CLINUVEL answer questions from the xeroderma pigmentosum community regarding potential for future clinical trials and therapies for XP
Introducing #BearsforRare campaign for Teddington Trust
Переглядів 467 років тому
How to get involved and support #BearsforRare bringing vital free education to children with the rare disease; xeroderma pigmentosum
UV cooling hat - guidance
Переглядів 2777 років тому
Guidance video for UK Xeroderma Pigmentosum patients trialling the Enfant de la Lune UV protective cooling hat. Funded and distributed by Teddington Trust. To register to take part in a 1 month patient trial email support@teddinggtontrust.com. UK patients only
Little Ted goes to school...
Переглядів 2818 років тому
Find our why your school should join our Little Ted goes to school... scheme. Teaching key messages of Rare Disease, Diversity, Inclusion and Sun Safety for all.
Little Ted & Friends
Переглядів 2,2 тис.8 років тому
Little Ted & Friends Animation - animated fun looking at the genetics behind the rare disease of Xeroderma Pigmentosum, and looking at how Little Ted and patients with XP can keep safe from Ultra-violet light.
Patient/Family Voice_Vblog_Nicola_002
Переглядів 328 років тому
A quick tour of our UV safe little boy play den
Patient/Family Voice-Vblog_Nicola_001
Переглядів 1058 років тому
Patient/Family Voice-Vblog_Nicola_001
Teddington Trust -Team Ted Intro 3 (Rebecca)
Переглядів 648 років тому
Teddington Trust -Team Ted Intro 3 (Rebecca)
Teddington Trust - Team Ted Intro 2 (Sue)
Переглядів 398 років тому
Teddington Trust - Team Ted Intro 2 (Sue)
Teddington Trust - Team Ted Intro 1 (Nicola)
Переглядів 3288 років тому
Teddington Trust - Team Ted Intro 1 (Nicola)
It is great that you let every one know that all the people with xeroxderma pigmentosom have a another visitor to choose from 😂