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Petitioning Scottish Government and 5 others

Include logging of birth marks in Red Book (Child Health Record)

The following conditions all share the common trait of having 'birth marks'

Neurofibromatosis 1&2; Legius syndrome; Tuberous sclerosis; Fanconi anemia, a rare genetic disease; Idiopathic Ataxia telangiectasia; Basal cell nevus syndrome; Benign congenital skin lesion; Bloom syndrome; Chediak Higashi syndrome; Congenital naevus Gaucher disease; Hunter syndrome; Maffucci syndrome; Multiple mucosal neuroma syndrome; Noonan syndrome; Pulmonary Stenosis; Silver–Russell syndrome; Watson syndrome; Wiskott–Aldrich syndrome and more.

For early diagnosis of these conditions we ask for The Red Book  (child health record) to have a section for logging such marks.

The logging of multiple birthmarks in the Red Book throughout the UK is the only way to ensure children with rare genetic conditions get the appropriate diagnosis and treatment, without this children and adults are suffering and even dying, and it is something so simple to do.

Here are some examples from parents that state why the logging of birth marks is important:

'I found out about NF1 via the Jeremy Kyle show!!!'

'My children's dad and I were accused of child abuse. This would of been avoided if cafe au laits were recorded as she had them from birth.'

'My daughter is now avoidably blind'

There are many more consequences.

People have a right to know who they are and what their future holds. Quite frankly it is astonishing that it is not already included, sign and share if you agree this just makes sense.

 

This petition was delivered to:
  • Scottish Government
  • NHS Northern Ireland
  • NHS Scotland
  • British government
  • NHS England
  • nhs wales

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