In this Section

Latest News

Find all our news here. We will endeavour to keep the news updated but we will need help from the community. If you have anything that you would like to submit as news to the site, then please contact us at our Contact Us  page. 

Our newsletter is available in both PDF and web formats. The newsletter is a seasonal publication, so we hope to have the document available tri-monthly; however, it does not always work out like that. 

News From Google

Developmental senescence emerges as a candidate mechanism in CHARGE syndrome - EurekAlert! Science News Releases

9/29/2026 8:43:39 PM

Developmental senescence emerges as a candidate mechanism in CHARGE syndrome  EurekAlert! Science News Releases

Man with rare disorder to skate for Team GB - BBC

8/13/2026 8:00:00 AM

Man with rare disorder to skate for Team GB  BBC

What’s New in CHARGE Syndrome Research: A 2024–2026 Update - 3billion

3/27/2026 5:18:22 PM

What’s New in CHARGE Syndrome Research: A 2024–2026 Update  3billion

Nine Months Old, a Heart Defect and No Explanation, Until a Dante Labs Whole Genome Identified Amira's CHARGE Syndrome - EIN Presswire

9/29/2026 12:54:00 PM

Nine Months Old, a Heart Defect and No Explanation, Until a Dante Labs Whole Genome Identified Amira's CHARGE Syndrome  EIN Presswire

Mum fears deaf son is missing out at school due to BSL gap - BBC

6/24/2026 8:00:00 AM

Mum fears deaf son is missing out at school due to BSL gap  BBC

Developmental senescence misregulation in congenital disorders: CHARGE syndrome as a candidate model - EurekAlert! Science News Releases

9/29/2026 9:20:39 PM

Developmental senescence misregulation in congenital disorders: CHARGE syndrome as a candidate model  EurekAlert! Science News Releases

Huntingdonshire mum remembers 'tenacious' son who lived with rare genetic disorder - The Hunts Post

5/12/2026 8:00:00 AM

Huntingdonshire mum remembers 'tenacious' son who lived with rare genetic disorder  The Hunts Post

Isolated absent pulmonary valve syndrome with intact ventricular septum in a child with CHARGE syndrome: a rare case report and review of the literature - Frontiers

6/8/2026 7:48:19 AM

Isolated absent pulmonary valve syndrome with intact ventricular septum in a child with CHARGE syndrome: a rare case report and review of the literature  Frontiers

Self-directed supports are crucial for people with CHARGE syndrome - Columbia Missourian

5/5/2026 8:00:00 AM

Self-directed supports are crucial for people with CHARGE syndrome  Columbia Missourian

Beyond CHD7 gene: unveiling genetic diversity in clinically suspected CHARGE syndrome | Journal of Human Genetics - Nature

2/25/2025 8:00:00 AM

Beyond CHD7 gene: unveiling genetic diversity in clinically suspected CHARGE syndrome | Journal of Human Genetics  Nature

Latest News

Improving our understanding of the neurodevelopmental disorders caused by CHARGE syndrome could open the way for new treatments.

Improving our understanding of the neurodevelopmental disorders caused by CHARGE syndrome could open the way for new treatments.

Posted on Wednesday 6 April 2022

CHARGE syndrome, which affects approximately one in 10,000 newborns worldwide, is associated with neurological and behavioural conditions like intellectual disability, attention deficit disorder, conv…

Tyrese Dibba stars in animated class

Tyrese Dibba stars in animated class

Posted on Tuesday 22 March 2022

A teenager who helped thousands of people learn British Sign Language (BSL) during the first Covid-19 lockdown is being turned into an animated character in new lessons.

A Walk for Charge

A Walk for Charge

Posted on Tuesday 11 January 2022

Taidgh Hughes with family and friends will be making an epic walk along the Jurassic coast in memory of his son that passed away having been diagnosed with CHARGE Syndrome which is a rare genetic dise…

Behaviour In Charge Syndrome Online Questionnaire Study

Behaviour In Charge Syndrome Online Questionnaire Study

Posted on Tuesday 8 December 2020

Study looking at a range of behaviours, skills and impairments in CHARGE syndrome.