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.
professionals can obtain further information from Dr. Brian
Wilson, Newcastle University
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.
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.
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