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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

CHARGE Syndrome in a Six-Month-Old Male Infant: A Case Report - Cureus

5/15/2025 8:00:00 AM

CHARGE Syndrome in a Six-Month-Old Male Infant: A Case Report  Cureus

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

Mother of daughter with rare disability writes book celebrating difference - London Evening Standard

4/14/2025 8:00:00 AM

Mother of daughter with rare disability writes book celebrating difference  London Evening Standard

Additional charge syndrome prevails in RDD; 1 BDO given charge of 4 blocks - Greater Kashmir

7/31/2025 7:52:54 PM

Additional charge syndrome prevails in RDD; 1 BDO given charge of 4 blocks  Greater Kashmir

Dozens gather for 6th annual Walk and Roll for CHARGE Syndrome to support local boy - KIMA

5/11/2025 8:00:00 AM

Dozens gather for 6th annual Walk and Roll for CHARGE Syndrome to support local boy  KIMA

Should autism spectrum disorder be considered part of CHARGE syndrome? A cross-sectional study of 46 patients - Orphanet Journal of Rare Diseases

6/3/2020 8:00:00 AM

Should autism spectrum disorder be considered part of CHARGE syndrome? A cross-sectional study of 46 patients  Orphanet Journal of Rare Diseases

Gastrointestinal and feeding difficulties in CHARGE syndrome: A review from head‐to‐toe - Wiley Online Library

10/30/2017 7:00:00 AM

Gastrointestinal and feeding difficulties in CHARGE syndrome: A review from head‐to‐toe  Wiley Online Library

Help our families with CHARGE Syndrome to connect and learn - Givealittle

6/25/2025 12:40:48 AM

Help our families with CHARGE Syndrome to connect and learn  Givealittle

'She's tough in all the ways that I wish I was tough' | Knoxville family finds hope and strength in daughter’s CHARGE syndrome journey - WBIR

3/26/2025 7:00:00 AM

'She's tough in all the ways that I wish I was tough' | Knoxville family finds hope and strength in daughter’s CHARGE syndrome journey  WBIR

Eyes on CHARGE syndrome: Roles of CHD7 in ocular development - Frontiers

6/25/2024 4:06:13 PM

Eyes on CHARGE syndrome: Roles of CHD7 in ocular development  Frontiers

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.