Amy and Friends - Cockayne Syndrome Support Amy and Friends - Cockayne Syndrome Support

Bertie Butterfly is kindly sponsored by Holly Lodge School for Girls, Liverpool.

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Roald Dahl’s Marvellous Children’s Charity

Morgan Foundation Winner 2012

UK Genetic Disorders Partnership Network
This year is Amy and Friends 10th annual family/scientific medical conference. If you would like to sponsor a family/the science section or any other aspect of this event please contact us on
Amy and Friends 10th AnnualScientific / Family Conference 18th – 20th August 2017 Registration Form
This event is the largest of it's kind by a DNA repair disorder patient group and we are very grateful to all who help us MAKE A DIFFERENCE TO LITTLE LIVES.
GenIDA, an online study for CS patient and families

The GenIDA project is a cohort study for genetic diseases whereby clinical information is entered and updated by the family themselves.
The aim is to collect medical data to help gaining better knowledge on the evolution of the disease over life.

This is extremely useful in Cockayne syndrome research because of the low frequency of the disease and the geographical dispersion of the patients.
Two online questionnaires allow providing and updating the relevant health information: a CS specific questionnaire (15 questions) and a main questionnaire (46 questions).

The data is kept anonymous and are stored on secured servers hosted in France.
Anonymous summary of the data will be publicly available for families and for health care professionals.
We hope that these novel and medically significant knowledge can be translated in improved healthcare and that this e-cohort will favour international clinical studies
the more regular participants, the more informative will be the results.

Welcome to Amy and Friends - Cockayne Syndrome Support

Who are Amy and Friends?

Our group was formed to facilitate the support of children and families suffering from Cockayne Syndrome (CS). Our group consists of CS sufferers, their parents and siblings, their extended families, family friends, representatives from medical disciplines, non medical therapists and other interested parties. We organise meetings for group members to share experiences, knowledge and to gain support from each other. We assist families in attending other support opportunities and taking part in CS research programmes. Sufferers and families are able to meet others in similar situations to themselves, perhaps for the first time ever. This makes them feel less isolated and helps them to learn more about this illness. Families who have lost children can meet with someone who has shared their experience in the knowledge that their child will never be forgotten.

What We Do:

Amy and Friends have an annual family/medical conference. This is attended by specialists from across the globe. Our children and families have the most amazing time!

We hold a weekly siblings club called My Time To Be Me. This group is being piloted in the North West UK area and we hope to open similar clubs in the near future! Siblings love this time that is just for them....they experience many different projects - ideas are set by themselves and have included music/photography/CSI and much more! The children have bonded well with their peers and have gained their 'own identity'. They have grown in confidence and self esteem!

Amy and Friends take part in research programmes across the world. If you would like further information regarding this please email either or

We provide equipment where possible to childrenyoung adults and have contacts with other organisations. We have been able to distribute sensory equipment/ipads for communication and independence/walking aids and helped with wishes.

Amy and Friends hold an annual Mums/Dads/children and young adults fun day out.

We are advocates for families and much much more!

Cockayne Syndrome

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Copyright© 2011 Amy and Friends - Cockayne Syndrome UK Charity Number: 1119746