News
RARE Youth Revolution
The RARE Youth Revolution has begun RARE Revolution Magazine have announced the launch of the RARE Youth Revolution movement, along with its new online home at rareyouthrevolution This online platform is giving a voice to the youth of RARE, sharing news and views on a...
Virtual Coffee and Chat Groups
Virtual Support Groups We are really excited to announce the launch of a new support group service. We are introducing 'coffee and a chat' virtual groups. A one-hour online meeting where you can get together to share support and information. The groups will be...
Annual Convention 2020 – Cancelled
2020 CGF Annual Convention - CANCELLED Given the severity of the current COVID-19 pandemic, and after much deliberation, we have made the decision to cancel this year's CGF Annual Convention, that was to have taken place from 2nd to 4th of October in Warwick. It is...
‘Growth Matters’ Podcast Launched
'Growth Matters' - podcast launched We are delighted to announce the launch of our very own podcast, which we have appropriately called 'Growth Matters'. Growth Matters is a monthly 'chat magazine' that will bring latest news, research updates, details of growth...
Particpants Needed for Growth Hormone Therapy Study
Particpants Needed for Injectable Growth Hormone Therapy Research A UK based market research agency called Bryter is looking for UK residents to take part in research studies on the subject of injectable human growth hormone therapy. They have two studies which will...
Participants 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...
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