Neurofibromatosis is complex.
Care shouldn't be.
It takes a team
Neurofibromatosis (NF) is a complex, lifelong condition that can affect the brain, nerves, bones, vision and more, it changes over time and can present differently from one patient to the next.
People with NF often need care from many specialists, carefully coordinated to avoid serious complications. Yet access to specialist NF clinics, where a lead clinician and nurse specialist oversees and coordinates this care, is limited.
Without these clinics, families are left to navigate this complexity alone: juggling multiple specialists, long waitlists, unfamiliar providers and travel, with no single team responsible for oversight. When care isn’t coordinated, vital monitoring can be delayed or missed.
NF is complex. Appointments shouldn’t be. Answers shouldn’t be. Access shouldn’t be.
Show your support this May, by advocating for better care for NF.
#NFawarenessmonth #CareShouldn'tBeComplex
From diagnosis into darkness
For most people, a diagnosis is the beginning of a treatment pathway, but for NF, it’s the first step into a healthcare abyss. Unlike other conditions, there is no prognosis for how symptoms will develop, or formalised care plan.
A condition that increases the risk of cancer and can impact vision, hearing, skin, learning, speech, mobility, bone development and more, needs comprehensive and consistent care.
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of NF patients cannot access coordinated care.
of healthcare professionals feel more specialist care is needed.
are spent caring for a child with NF by a caregiver each week.
of caregivers experienced a moderate to significant impact on their mental health.
wait more than a year to see a specialist
of people with NF1 experience neurocognitive challenges, including executive functioning.
Neurofibromatosis Stories
Naomi
Naomi was 13 when a tumour appeared near her eye, causing her significant pain and discomfort. It took six surgeries and 14 years before she received a definitive diagnosis of schwannomatosis, a rare form of NF.
Archie
Archie was born in a regional area. After being diagnosed with NF, the family travelled interstate for care, at their own expense. The family have since left their beloved hometown to more closer to healthcare professionals.
Maria
As a mother of two girls, Maria has her hands full. The complexity of NF often upends the family routine, with frequent travel to the inner city for appointments and treatments.
Resources
From social media graphics and posters to how-to guides and fact sheets, you can access materials to learn more about NF, the awareness month campaign and how to spread a message online, or in your local community.
Shining a light on NF
Shine a Light is a global initiative that brings NF out of the shadows and into the community as part of NF Awareness Month in May.
Thank you to our supporters
