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News

Family Stories Book is published

We are very happy to announce that the book of family stories from our CdLS parents and carers, has been published and is available to buy on Amazon... read more

 

Advice, Tips and Ideas for Coronavirus Situation

The Foundation has put together some useful information, tips to be prepared for any eventuality and ideas for things to do while in isolation... read more

 

COVID-19 and Implications for CdLS

We have sought advice from our professionals on any extra considerations for our individuals with CdLS... read more

 

Ranitidine Recall - Advice

We've had many enquiries following media coverage about contamination of Ranitidine, which many of our CdLS people are taking... read more 

What's On & Research

Participation Opportunity: Social Difficulties in Children with CdLS

We are looking for children with Cornelia de Lange Syndrome aged 4-17 years to complete some fun activities that will help us find out more about the social difficulties that some children with CdLS experience… read more  

Study into Impact on Wellbeing During Pandemic

Are you a parent of a child with a rare disorder? We want to find out how Covid-19 has affected your family’s wellbeing. Take part in our survey to help us find ways to support families now and in the future… read more   

Assessment Tools for Emotional Distress. Research Still Ongoing

Researchers are offering a £5 voucher incentive for participants in their work on developing improved assessment tools to detect distress in children with learning disabilities… read more