Research funding and advocacy support for genetic condition

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Health minister Greg Hunt has announced the federal government will invest $8 million to support the Children’s Tumour Foundation and research into neurofibromatosis.

Neurofibromatosis is a genetic condition that causes tumours to form around nerves, including in the brain and spinal cord. It is more common in children and young adults and while there currently is no cure, treatments can help manage this condition.

There are three types of neurofibromatosis and the most prevalent, neurofibromatosis type 1, affects up to one in every 2,500 Australians.

Minister Hunt said the $7 million Medical Research Future Fund (MRFF) Neurofibromatosis Research Grant Opportunity will support research projects to develop new interventions and improve healthcare and outcomes for people living with neurofibromatosis.

He said the 2021 Neurofibromatosis Research Grant Opportunity funding is part of the Emerging Priorities and Consumer Driven Research (EPCDR) Initiative.

"The initiative helps to support high quality biomedical, clinical, health services and population health research that improves patient care, find new diagnoses, treatments and cures for those suffering from rare and debilitating conditions and translate new discoveries into clinical practice," said Minister Hunt, adding the government will also provide $1 million over four years to the Children’s Tumour Foundation to continue its work in advocacy, research and support for families with children who live with neurofibromatosis.