Contact - SCN2A Australia

10 hours ago

This week is international Infantile Spasms Awareness Week which is raising awareness of this catastrophic and potentially fatal form of #childhood #epilepsy #epilepsyawareness. It is essential to spot and stop #seizures as quickly as possible to prevent developmental regression #children #seizures #disabilities #health #SCN2A ... See MoreSee Less

Infantile Spasms Action Network | ISAN

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Infantile SpasmsAwareness Week December 1-7, 2020 #ISAW2020 What is IS Infantile Spasms (IS) are a medical emergency. Infantile spasms are a rare, but very serious type of seizure. Infantile spasms ar...

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SCN2A Australia

23 hours ago

A recent paper - The information needs of parents of children with early-onset epilepsy:

HIGHLIGHTS:

• Parents need understandable information about early-onset epilepsy and associated comorbidities throughout their child’s lifespan.

• Unmet information needs can impede access to healthcare resources, and reduce parent capacity to manage and cope with their child’s condition.

• Parents experience challenges accessing clinicians with expertise in early-onset epilepsy.

• Focused early-onset epilepsy education for local health care providers is recommended.

We work with this research group and have parent representation on their consumer group.

www.sciencedirect.com/science/article/abs/pii/S1525505020305618 ... See MoreSee Less

The information needs of parents of children with early-onset epilepsy: A systematic review

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Early-onset epilepsy has broad physical and psychosocial impacts, and parents have a wide variety of information needs. This systematic review set out...

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