making life more equitable for everyone living with nf
Everyday life is complicated for those living with, and impacted by NF. We advocate to ensure everyone can access the support they need, when they need it. Our goal is to make life more equitable for those living with this complex genetic condition.
As the leading, national organisation working alongside Australians impacted by NF, we advocate for improved access to healthcare, education supports and economic position, as well as greater investments into research.
Health Professional Education
We reach out to General Practitioners and other medical and health associations to provide information and resources to assist with the management and referral of patients to clinics and NF Specialists.
Therapeutic Lobbying
We work with leading therapeutic organisations to reduce the burden of disease through earlier access to treatments and therapies.
Government Lobbying
We make representations to local, state and federal government to improve access to multi-disciplinary clinics, enable effective treatments to be available earlier, increase the number and availability of other services for people with NF, assist with programs and equipment at schools to help with learning difficulties along with seeking funding so we can expand the support services we offer.
LEND YOUR VOICE
Condition awareness
Despite NF being more common than some other widely recognised conditions, community knowledge and understanding of NF is low. We work to make more people aware to slash stigma, normalise genetic diversity and encourage equitable treatment in society.
Learn more about NF Awareness Month in May
Self-advocacy
We empower families to ensure they are able to support themselves and their child through personalised care and resources.
In addition to the direct support we provide people, we also offer tools like "NF Community Cards". These cards can be ordered for free through our store and can serve as an easy communication for someone struggling to talk about their condition. tired of talking about their condition or feeling uncomfortable in a situation.
Share your story