For parents and caregivers of persons with CdLS, concerns often arise with regard to the well being of their loved one. The Scientific Advisory Committee are available on line which allows users to e-mail their questions for response, view treatment protocols, read the SAC's published work and access growth and skills charts. Before emailing the SAC however, search the online library to ensure that your question has not already been answered.

Whether, you are seeking assurance that your child is developing normally or you need guidance on how to deal with a particular problem, simply click on the link below to view the online library of SAC answers to commonly asked questions about CdlS.

Previous research into the behavioural characteristics of the syndrome has largely focused on the prevalence and nature of self-injurious behaviour in CdLS and possible underlying causes. More recently, research has widened and has begun to consider other behavioural characteristics of the syndrome.

Read Dr Oliver’s full report HERE

The CdLS research team at the Children’s Hospital of Philadelphia (CHoP) recently discovered a third gene involved in CdLS. The information was published in an article in the March 2007 edition of the American Journal of Human Genetics along with more information about the second CdLS gene. Dr Meredith Wilson, Clinical Geneticist and Australian Representative, International CdLS Specialist Advisory Council gives an overview HERE

Dr Meredith Wilson, Clinical Geneticist and Australian Representative, International CdLS Specialist Advisory Council gives details of this new discovery and what it means to families.

Dr Wilson's full report HERE

Two articles describing the discovery of a gene on chromosome 5 were published in the June 2004 edition of the medical journal, Nature Genetics. Most people without a genetic science background would have difficult understanding the articles. Dr Meredith Wilson, Professional Director and National SAC Representative, has provided a summary which will explain a little of what the research terms have shown and how they did this.

Please read Dr Wilson's full report HERE

Dr Robyn Cosford MBBS (Hons) FACNEM gave an excellent session at the Sydney Conference in 2003. With her kind permission, an EXCERPT of her paper titled "Nutritional, Metabolic and Environmental Influences in Children's Health" is provided here for all CdLS parents.