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

My sister proved doctors wrong for 32 years - I want everyone to ... - Metro.co.uk

11/27/2023 2:00:00 PM

My sister proved doctors wrong for 32 years - I want everyone to ...  Metro.co.uk

Pulmonary and Clinical Outcomes After DROOL Procedure for ... - JAMA Network

11/22/2023 8:00:00 AM

Pulmonary and Clinical Outcomes After DROOL Procedure for ...  JAMA Network

Bo'ness six-year-old Thea Nisbet has won Young Sibling of the Year ... - Falkirk Herald

11/24/2023 1:20:00 PM

Bo'ness six-year-old Thea Nisbet has won Young Sibling of the Year ...  Falkirk Herald

Charity award nomination for Thea, 6, who bravely faced huge ... - Falkirk Herald

11/1/2023 7:00:00 AM

Charity award nomination for Thea, 6, who bravely faced huge ...  Falkirk Herald

Unraveling the Trio of Interrupted Descending Aorta, Aortic Stenosis ... - Cureus

11/25/2023 2:49:36 AM

Unraveling the Trio of Interrupted Descending Aorta, Aortic Stenosis ...  Cureus

Bear-O Care provides support for adults with multiple disabilities - rivertonjournal.com

11/7/2023 8:00:00 AM

Bear-O Care provides support for adults with multiple disabilities  rivertonjournal.com

Waikato boy with congenital athymia, Charge syndrome fighting to ... - New Zealand Herald

10/13/2023 8:00:00 AM

Waikato boy with congenital athymia, Charge syndrome fighting to ...  New Zealand Herald

Help Baby Raya Defeat "Charge Syndrome" #God4Raya, organized ... - GoFundMe

8/13/2023 8:00:00 AM

Help Baby Raya Defeat "Charge Syndrome" #God4Raya, organized ...  GoFundMe

William Muir Obituary - Kirk & Nice Suburban Chapel, Inc. - 2023 - Legacy.com

11/7/2023 8:00:00 AM

William Muir Obituary - Kirk & Nice Suburban Chapel, Inc. - 2023  Legacy.com

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

9/11/2023 8:00:00 AM

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

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.