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Cornelia de Lange Syndrome Association (Australasia) Inc

Reaching Out - Providing Help - Giving Hope to Families


Medical Record Proformas

To help you keep track of health events and details of behaviours etc, these proformas are useful as a permanent record that can move with your son or daughter out of home, take with you to hospital and as a memory jogger for parents who swore they would never forget those little details!

Annual Health Review | Behaviour Monitoring | CdLS Care Card | Carer Emergency Card | Contact People | Cumulative Medical Record | Menstruation Chart | Nutrition and Swallowing Checklist | Operations and Proceedures | Weight Record

Growth charts for head circumference, height and weight

From the World Federation of CdLS Family Support Groups.

Growth charts for height, weight and head circumference parameters of boys or girls with CdLS at different ages. Using these, a practitioner can follow growth as compared to other affected individuals rather than the unaffected population. If an individual deviates from the CdLS curve, then further investigation may be warranted.

Growth Information and Charts.

Psychomotor Development Chart.

Everything we know about CdLS to date!

The international Scientific Advisory Council (SAC) and Federation of CdLS National Support Groups have collaborated to produce this consensus statement which is presented here in two versions: that which was published in 'Nature Reviews, Genetics' in October 2018, and the Lay version which is a translation of the same document using language which is easier for families to understand.

Thanks to the accredited people at Cerebra Centre, UK, who worked on this translation.

You are welcome to download and share with others, particularly your person's treating physicians and therapists.

Download the Diagnosis and Management of CdLS lay-version pdf.

Diagnosis and management of Cornelia de Lange syndrome: first international consensus statement

October 2018 - Expert Concensus Document.

Download the pdf.

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