UCB collaborates with organisations to support patients with neurological conditions
Epilepsy Action Australia
For over seven decades, Epilepsy Action Australia has served as the leading national provider of comprehensive epilepsy services for individuals living with the condition, their families, healthcare practitioners, and the wider community. Addressing the needs of the estimated 266,000 Australians with epilepsy, the organisation delivers national support programs, evidence-based education, and facilitates research initiatives to improve outcomes and advance treatment options. Committed to equitable service delivery across Australia, Epilepsy Action Australia maintains a nationwide network of specialist Epilepsy Registered Nurses who offer tailored information, support, referral, and education. The organisation provides targeted training for diverse professional groups to enhance understanding and appropriate seizure response. Its Online Academy offers a range of accessible digital resources, including a nationally accredited Vocational Education and Training (VET) course in Epilepsy Management. Furthermore, Epilepsy Action Australia actively supports collaborative research with tertiary institutions to contribute to advancements in the understanding, diagnosis, and management of epilepsy.
Epilepsy Australia
Epilepsy Australia, established in 2000, is the national partnership of five state and territory epilepsy organisations, combining local expertise to provide a national perspective on the needs of Australians living with epilepsy and their families. As a not-for-profit and nationally registered charity, Epilepsy Australia is dedicated to improving the quality of life of individuals living with epilepsy and other seizure disorders. Epilepsy Australia raises awareness of epilepsy and other seizure disorders through the promotion of national events and media campaigns and is dedicated to promoting specialist research into the medical and social aspects of epilepsy. It also provides high-quality, independently evaluated information, including a specialised epilepsy information kit for Indigenous communities, and fosters a collaborative network between member associations. Through its advocacy efforts, Epilepsy Australia lobbies for better access to services, increased public funding, and a comprehensive understanding of the challenges faced by people living with epilepsy.
Epilepsy Foundation
The Epilepsy Foundation is committed to improving the lives of people affected by epilepsy through evidence-based practices. They aim to prevent avoidable deaths, ensure children receive a quality education, support employment opportunities, and foster a sense of safety and community for people living with epilepsy. Key services of the Epilepsy Foundation include support programs, education and training, and community awareness initiatives. The Epilepsy Foundation believes an understanding of epilepsy can help promote and improve the quality of life of people living with the condition, and are dedicated to reducing stigma, improving support, and advancing research towards preventing unnecessary deaths and finding a cure.
Genetic Epilepsy Team Australia
Genetic Epilepsy Team Australia (GETA) is comprised of a group of parents whose children have rare genetic epilepsy. Although their children have different types of epilepsy, shared experiences of the condition have brought them together. GETA collaborates with world leaders in the field of genetic epilepsy to support cutting-edge research in Australia, including stem cell studies, mouse models, and biotechnology. The mission of GETA is to help world-leading Australian researchers find a cure for genetic epilepsy. GETA also aims to raise awareness about the various forms of genetic epilepsy, promote Australia’s leading role in research, and raise funds for developing cures and therapies. A key initiative of GETA is establishing a precision medicine centre in Melbourne, dedicated to developing treatments for genetic epilepsy. By working alongside health researchers, families, and children, GETA is dedicated to advancing research and providing hope for those impacted by genetic epilepsy.
Myasthenia Alliance Australia
Myasthenia Alliance Australia is the national peak body representing individuals with myasthenia gravis and associated conditions. Formed to support the needs of people affected with the condition, Myasthenia Alliance Australia comprises eligible State Associations. Currently, Queensland and New South Wales are in the alliance, with other states encouraged to join if they have registered associations. Myasthenia Alliance Australia is focused on supporting individuals sharing diverse experiences with their condition, fostering meaningful dialogue among associations to share new information, and developing cooperative initiatives that unify the community through a national platform under a single voice. Myasthenia Alliance Australia also works to promote awareness and understanding of the condition through education and advocacy for practical solutions and supports ongoing research.
Rare Voices Australia
Rare Voices Australia (RVA) is the national peak body for Australians living with a rare disease. RVA provides a strong, unified voice to advocate for policy as well as health, disability and other systems that work for people living with a rare disease. RVA’s person-centred approach involves collaboration with key stakeholders, including people living with a rare disease, governments, key peak bodies, researchers, clinicians and industry to drive the best outcomes for Australians living with a rare disease. RVA led the collaborative development of the Australian Government’s National Strategic Action Plan for Rare Diseases (the Action Plan). As part of implementing the Action Plan, RVA is also leading the collaborative development of the Rare Awareness Rare Education (RARE) Portal, Australia’s growing national resource for rare diseases. The RARE Portal houses rare disease information and resources that are customised for the Australian context as well as the RARE Helpline, which provides service navigation support.
AU-OT-2400030. June 2025.