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News

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

Goodbye to a Pioneer, Dr Laird Jackson

We are immensely sad to announce the loss of one of the pioneers of medical involvement in CdLS, Dr Laird Jackson... read more

New Global Treatment Guidelines Online Now!

The family friendly version of the new Treatment Guidelines can now be found on the Federation website... read more

Survey Results Feedback

We ran the Survey Monkey poll of how we are doing as a support group... read more

GDPR Survey - IMPORTANT

We need to have your specific consents to be able to keep your information on our database or to be able to contact you. Without those consents, we will not be able to email you or send you "Reaching Out." Please fill in this survey. It takes a few minutes and we will then be able to keep in touch. If you are having trouble seeing the survey here, you can access it by clicking this link https://www.surveymonkey.co.uk/r/6KQKC3J Thank you.

Create your own user feedback survey

   

Could you be a Trustee for the Foundation?    

We have a number of vacancies on the board of Trustees. We are looking to recruit individuals who can add the required skills to the board... read more
       

What's On

Spring Conference Confirmed in Basingstoke 25th April

The first family weekend of 2020 will be at the Crowne Plaza, Basingstoke on the weekend of 25th April... read more

Anxiety Research Ongoing

Aston University's ongoing research into Anxiety will have many opportunities for families to get involved... read more