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Amy and Friends supports children, young people, families and carers suffering from DNA repair disorders in childhood, including Cockayne Syndrome (CS), Trichothiodystrophy (TTD).
Amy and Friends supports children, young people, families and carers suffering from DNA repair disorders in childhood, including Cockayne Syndrome (CS), Trichothiodystrophy (TTD).
Amy and Friends was formed to support children, young adults and families suffering from Cockayne Syndrome and linked DNA repair disorders. They meet with families and specialists to share experiences, knowledge and to gain support from each other. They organise and accompany families when attending Rare Disease Clinic at Guy’s and St Thomas’ NHS Foundation Trust and actively take part in research programmes, working closely with a team of worldwide medical specialists.
They organise for families to meet others in similar situations to themselves, often for the first/last time. This helps lessen isolation, builds confidence, aids wellbeing and improves knowledge. And they provide anticipatory grief and bereavement support, working in partnership with Love, Jasmine.
To find out more, visit the Amy and Friends website.
