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

Disabled girl's grandad carer cannot afford haircut after giving up work - BBC

10/2/2023 8:00:00 AM

Disabled girl's grandad carer cannot afford haircut after giving up work  BBC

Upgrading the disease-gene association between CDK9 and CHARGE-like syndrome - BioWorld Online

11/6/2023 8:00:00 AM

Upgrading the disease-gene association between CDK9 and CHARGE-like syndrome  BioWorld Online

Charity award nomination for Thea, 6, who bravely faced huge upheaval after brother born with rare genetic syndrome - Falkirk Herald

11/1/2023 7:00:00 AM

Charity award nomination for Thea, 6, who bravely faced huge upheaval after brother born with rare genetic syndrome  Falkirk Herald

Heartbroken Scots dad describes 'darkest hour' after losing son to rare disease - Daily Record

9/7/2023 8:00:00 AM

Heartbroken Scots dad describes 'darkest hour' after losing son to rare disease  Daily Record

Crawley friends climbing Snowdonia to help raise money for four-year-old with a rare genetic disorder - SussexWorld

9/11/2023 8:00:00 AM

Crawley friends climbing Snowdonia to help raise money for four-year-old with a rare genetic disorder  SussexWorld

Waikato boy with congenital athymia, Charge syndrome fighting to beat the odds since his first breath - Waikato Herald

10/13/2023 8:00:00 AM

Waikato boy with congenital athymia, Charge syndrome fighting to beat the odds since his first breath  Waikato Herald

CHARGE syndrome: a review of the immunological aspects | European Journal of Human Genetics - Nature.com

2/18/2015 8:00:00 AM

CHARGE syndrome: a review of the immunological aspects | European Journal of Human Genetics  Nature.com

Mondini Syndrome: Symptoms, Causes, Diagnosis, Treatment - Verywell Health

7/23/2023 8:00:00 AM

Mondini Syndrome: Symptoms, Causes, Diagnosis, Treatment  Verywell Health

Brody in Charge: Parents Campaign to Help Brody Overcome Itchy Skin - Good Things Guy

12/14/2023 8:00:00 AM

Brody in Charge: Parents Campaign to Help Brody Overcome Itchy Skin  Good Things Guy

CHARGE syndrome protein CHD7 regulates epigenomic activation of enhancers in granule cell precursors and ... - Nature.com

9/29/2021 8:00:00 AM

CHARGE syndrome protein CHD7 regulates epigenomic activation of enhancers in granule cell precursors and ...  Nature.com

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.