Supporting children with rare diseases

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As Rare Disease Day takes place nationally today, we are delighted to be supporting Hemispherectomy Foundation Australia (HFA)'s upcoming educational workshops, which aim to improve the rehabilitation knowledge of families and achieve optimal health and wellbeing outcomes for children who have undergone hemispherectomy brain surgery. 

HFA assists families and carers of children who have undergone hemispherectomy brain surgery due to critical and rare illnesses which cause life-threatening epilepsy. These families often face significant challenges following hemispherectomy surgery. Given the infrequency of this operation, local medical professionals may not have the specialised expertise to support optimal rehabilitation of children who have undergone this surgery. 

The two-days of workshops, taking place on 10 and 11 March, will cover the latest evidence on the range of rehabilitation required to address post-surgery health needs of hemispherectomy children, including minimising risk of developing acute or chronic conditions.

According to statistics shared by Rare Disease Australia, genetic, chronic and debilitating diseases affect up to 400,000 Australian children at any one time, impacting sufferers, families and carers. We thank the amazing volunteers at HFA who assist this vulnerable group by providing invaluable support to affected families.

Click here to find out more about HFA's two-day family educational workshop.