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The principle aim of the Chronic Illness Alliance Incorporated is to build a better focus in health policy and health services for all people with chronic illnesses. The Alliance represents over 40 consumer and advocacy organizations, both state and national, that share a common concern about the current inequalities in state and national policy, planning and service decisions that affect the health and welfare of people with chronic illness and actively works to promote a just and equitable distribution of resources to redress inequalities in the health status of different groups of the Australian population. It does this through education and research projects. www.chronicillness.org.au
Meningioma Mommas is a non-profit foundation with a unique 24/7 online forum for those newly diagnosed with meningioma as well as to long term survivors and caregivers during their journey. A meningioma is a mainly benign tumour that grows out of the meninges. Seizures often arise from these tumours and epilepsy becomes another challenge for those affected to overcome. A unique partnership has been formed between Epilepsy Australia and American-based Meningioma Mommas to create a 24/7 online epilepsy forum: Everything Epilepsy providing the opportunity for all people living with epilepsy, not just those living with meningiomas, to share their personal experiences of epilepsy. www.meningiomamommas.org
Epilepsy Australia National Help Line 1300 852 8653
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More than 15,000 copies of a book that brings together global expertise on SUDEP will have been distributed to epilepsy communities around the world by the end of the 66th annual American Epilepsy Society conference.
Epilepsy Australia, in partnership with Flinders University is conducting an online survey exploring the experiences and needs of people who have been bereaved by epilepsy.