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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.

Our Mission

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 ground-breaking research in the UK and internationally.

Our Service

• Amy and Friends provide 24/7 support via an online private forum.
• Weekly home visits to families, giving parents/carers/siblings some vital respite.  We also run a variety of online sessions including wellbeing/relaxation, meet/chat, and counselling. Family fun activities – sending out activity packs, care packages, and obtaining specialist equipment and wishes from outside organisations.
• Twice monthly, we organise transport and an overnight stay for families who are attending the Rare Disease Centre in London.  We accompany 10 patients and their families who are seen each month. Families who require financial support should contact us.
• Annually, we host a family/medical conference, providing support, specifically designed activities, that cater for each family member and their specific needs. Clinicians and scientists come together from across the globe to meet families, provide information on up-to-date research and existing studies.
• We continually take part in research programmes across the world, which enables scientists and clinicians to improve their knowledge of DNA repair disorders. We have been instrumental in providing information towards medical papers, developing care plans, leaflets and specific growth charts.

Who is this aimed at?

Children, young people, families and carers suffering from DNA repair disorders in childhood, including Cockayne Syndrome (CS), Trichothiodystrophy (TTD)

When

Various days and times, please see our website for details

Where

Various locations

Office Address: Amy and Friends, Clwt Yr Arian, Y Nant, Eryrys, Denbighshire, CH7 4DJ

Cost

Free support

Donations welcomed

How to get involved

To find out more, please complete the contact form on our website, phone or email us directly.

Contact details

Phone: 07949 512968

Email: info@amyandfriends.org

For further information

For more information about Amy and Friends search Amy and Friends in this directory.

Visit the Amy and Friends website

Visit the Amy and Friends Facebook page