News
Particpants Needed for Pituitary Conditions Study
Understanding the Needs of Children with Pituitary ConditionsDr Alyson Norman from the University of Plymouth and Dr Sue Jackson from the University of the West of England are looking for participants in a study of children and young people with pituitary...
Recruits Needed for Sensory Profile Study
New project: Sensory profiles in rare genetic syndromes Researchers at the University of SheffieldWe are currently recruiting parents/caregivers of children (aged 3 – 14 years) with a diagnosis of either Sotos syndrome or Tatton-Brown Rahman syndrome (TBRS) to take...
New Blue Badge Rules
New Blue Badge rules in England to came into force on 30 August 2019 Last year the government announced its intention to expand the blue badge rules in England to make it easier for people with hidden disabilities such as autism to qualify. However, no date was...
Managing Growth Disorders Webinar
Managing growth disorders: integrating technology into a personalised approachYou may have missed the webinar on Tuesday 21st May but you still have the opportunity to watch it now.The webinar discussed non-adherence to GH therapy, why this is a...
King’s College London Research Project
Understanding and Improving Treatment Non-Adherence in Paediatric Growth Hormone Deficiency by Selina Graham PhD Researcher Clinical Practice & Medication Use Research Group Institute of Pharmaceutical Science King’s College London Our team here at...
Investigating Behaviour in Silver-Russell Syndrome
Investigating Behaviour in Silver-Russell Syndrome: Research Summary by Chloe Lane, Louisa Robinson, Megan Freeth For the past year, we have been conducting a study to investigate behavioural characteristics observed in SRS. The study involved a...
Communication Abilities of Children with Sotos Syndrome
Communication Abilities of Children with Sotos Syndrome: Research Summary by Chloe Lane, Megan Freeth, Louisa Robinson Sotos syndrome is a congenital overgrowth syndrome associated with intellectual disability. Previous research has reported...
IMAGINE ID Research Opportunity: Can you help?
IMAGINE ID is a research study that aims to increase understanding of children and young people with intellectual disability. It is supported by UNIQUE, the rare chromosome disorder charity. The IMAGINE ID team is very keen to learn more about...
Cordinated Care for Rare Diseases Focus Group
New research study investigating how care should be coordinated for rare conditions Are you 18 or over and a patient with a rare or undiagnosed condition? Are you the parent or carer of a patient with a rare or undiagnosed condition? Would you...
SGA Study News
SGA Metformin Study Was your child born ‘small for dates’? Are they still small for their age? Has their doctor told you they may need growth hormone injections to help them grow? They might be eligible to join a new study, find out more at:...
Survey 2018
Child Growth Foundation Survey We have developed this survey to capture your experiences and satisfaction relating to the support and treatment you are receiving from the staturoty bodies and from the Child Growth Foundation. By gaining your thoughts and...
Travelling this Summer?
Travelling Tips and Information With school holidays just around the corner you may be about to travel to places near and far in search of rest, relaxation and a really good time! It is holiday season and so we thought it important to share some advice and...
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