We are proud to tell that, after years of hard and voluntary work of many professionals of our CdLS World SAC the famous scientific magazine Nature Reviews | Genetics has published .
The CdLS guidelines paper has been out and is in PubMed from today on. I think we should all congratulate one another with this! This goes beyond the value that (obviously) this has for CdLS. It shows also that a paper dedicated to clinical care, and dealing with a rare disorder, can still be published in a journal of this class. It also indicates editors of journals realize how important this type of work is. And that is a gain for many!
Please do try now to make the content available to your colleagues, and maybe start to make some short video's in various languages explaining things for parents, like Peter had suggested before. The more widely it is used the better.
On behalf of all authors and CdLS-World SAC; Raoul Hennekam.
As chairman of the CdLS-World national I suggest and invite all national groups to work as recommended by Raoul. Let's use this milestone product and 'translate' it into readable information for our families so they can be the advocates for their loved ones and point to this to inform and educate doctors and caregivers the best possible..
