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

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



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 Any further drug reactions in this patient group should be reported to the regulatory authorities in your own country.

To contact Amy and Friends use the emails links or fill in the contact form below.

Jayne Hughes
(Founder and Co-ordinator)
Mark Hughes
(Co-founder and Treasurer)
Useful Email Contacts for Amy and Friends
Medical Advisory Board
Dr. Brian Wilson
UK Board of Medical Advisors

Consultant Geneticist
Great Ormond Street London

Dr. Peter Kang
 Paediatric Neurologist

Academic Title
Chief, Division of Pediatric Neurology
Associate Professor of Pediatrics
Joint Associate Professor of Neurology
Joint Associate Professor of
Molecular Genetics and Microbiology
Morten Schiebye-Knudsen MD
Oxidative DNA Damage Process
and Mitochondria Functions Unit

Phone: 410-558-8270

Dr Nadège Calmels
(Pharm. D, Ph. D)
Molecular geneticist

Laboratory of genetics diagnosis
University Hospital, Strasbourg, France

Activity: moleculardiagnosis of Cockayne syndrome
and other Nucleotide Excision Repair deficiencies.

Tel: (+33) 3 69 55 07 77

Dr. Vincent Laugel
Professor of Paediatric Neurology
Referral Centre for
Cockayne syndrome and related disorders

Strasbourg University Hospital
Avenue Moliere
F-67098 Strasbourg
Tel (+33) 3 88 12 84 98
Fax (+33) 3 88 12 83 30

Dr. Donata Orioli, PhD
Molecular geneticist
Institute of Molecular Genetics-CNR
Pavia, Italy

Tel: +39 0382 546330

Useful Links for Amy and Friends
Amy & Friends Nederland When You Wish Upon A Star
Caudwell Children Rare Disease UK
Spacekraft UK The Willow Foundation
CLIMB Children Living with Inherited Metabolic Diseases

 Contact FORM

We aim to reply to emails within 24 hours


Contact Address

Amy and Friends
OCC The Bowling Green
Village Road
CH43 5SR
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Copyright© 2011 Amy and Friends - Cockayne Syndrome UK Charity Number: 1119746