AMY AND FRIENDS
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Mission Statement
We are committed to improving the lives of individuals affected by DNA repair disorders in childhood, with compassion and through a family centred approach. With our network of dedicated staff, volunteers and expert medical professionals, we provide practical and emotional support, information, and education whilst promoting and engaging with groundbreaking research in the UK and internationally.
About This Cause
Amy and Friends was formed to support children/young adults and families suffering from Cockayne Syndrome and linked DNA repair disorders. We meet with families and specialists to share experiences, knowledge and to gain support from each other. We organise and accompany families when attending Rare Disease Clinic at Guy’s and St. Thomas’ NHS Foundation Trust and we actively take part in research programmes, working closely with a team of worldwide medical specialists. We 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. We provide anticipatory grief and bereavement support, working in partnership with Love, Jasmine.