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Advocacy
Making NF a national priority
As the only patient advocacy organisation and support service for Australians with NF, we work tirelessly to make life more equitable for everyone living with this complex condition.
Our advocacy work
Health and community sector
We engage associations and individuals to provide information and resources to assist with the management of NF and referral to clinics and specialists.
Business and therapeutics
We work with leading businesses and therapeutic organisations to reduce the burden of disease through earlier access to treatments and therapies.
Individual advocacy
We empower families to ensure they are able to support themselves and their child through personalised care and resources.
Government
We work with local, state and federal government to increase support services, improve access to multidisciplinary clinics, and to expand the services we offer.
Public awareness
We work to make more people aware to slash stigma, normalise genetic diversity and encourage equitable treatment in society.
Our impact
1 tumour-shrinking drug added to the PBS
$4.6 mill allocated from the MRFF to NF research
