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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IMPORTANT DRUG INFORMATION

Metronidazole (also known as Flagyl® or Metrolyl®) may cause acute liver failure in children with Cockayne syndrome and should be avoided. Please alert your doctors to this.

Health professionals can obtain further information from Dr. Brian Wilson, Newcastle University brian.wilson@newcastle.ac.uk Any further drug reactions in this patient group should be reported to the regulatory authorities in your own country. Please also inform the Cockayne Syndrome Natural History study based at Newcastle University using the e-mail address above.
Our 'retreat' is an annual medical/family conference which is funded with the help of our wonderful donors.

This is an essential part of our charitable work and brings together affected children, their siblings and immediate family and enables them to share experiences, knowledge and support.

Our amazing medical team come from as far and wide as the UK, France, USA and Japan and we are truly grateful for the time they give to us.
They explain the illness, symptoms and where research is developing throughout the world. They also inform us of any treatments that would benefit the children/young adults.

Children suffering from Cockayne Syndrome meet each other - sometimes this is the only chance to meet someone like them in their short lives - the joy of this experience is obvious to those around them....

Parents who have lost their precious children share memories and help other parents come to terms with loss.

Our 'retreats' are - as one 8 year old sibling described - the place where we feel safe.

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