Archive for June 2017

Few people realise that Noonan syndrome (NS) is the second most common syndromic cause of congenital heart disease, exceeded in prevalence only by Trisomy 21 (Down Syndrome). Several cardiovascular issues can occur in Noonan syndrome. The most common by far is pulmonary stenosis (often with dysplastic valves; 50–60%), followed by hypertrophic cardiomyopathy (20%), and an…

Parenting is never easy but the unique longitudinal demands of having a child with a rare disease places large emotional, physical, financial and social demands on parents and caregivers. What can exacerbate these demands is a lack of adequate emotional and practical supports, resources, education and understanding from friends and loved ones. A Baby is…