Help us improve care and support
Your donation today can progress our advocacy work to streamline care systems for people with complex needs.
A life without limitations
At the Children's Tumour Foundation, we're working tirelessly to improve the medical health and psychosocial well-being of children and adults with NF. We are the only advocacy body and support service for neurofibromatosis in Australia.
The health complications caused by NF are big, and so is the burden of managing the health system. Our focus this NF awareness month is on improving equitable access to coordinated care.
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Healthcare gaps leave families struggling
The logistical demands are endless: scheduling and attending numerous appointments with a dozen+ specialists, providing medications, high-stakes medical decisons, monitoring symptoms. Forms, follow-up, fees.
When coordinated care is out of reach, caregivers are forced to take on the role of a medical researcher, nurse and advocate, all while still bearing the responsibilities of being a parent, partner and employee.
Care shouldn't end when childhood does
Moving from paediatric to adult health care often means many individuals with NF fall through the cracks of the system. As a progressive condition, where symptoms can develop or worsen over a person's lifespan, it's important that everyone can access quality healthcare and supports.
It's exhausting to not only fight an unrelenting condition, but a fragmented healthcare system.
NF needs holistic, lifelong care
We're addressing the inequitable access to medical care, along with the isolation, overwhelm and mental health challenges families face in two key ways:
1. Addressing health needs
Goal: Enable equitable access to specialist medical care.
We do this in the following ways:
- Advocate for the NF community
- Support individual families to navigate NF
- Enable research and clinical trails
- Develop a national, standard model of care
- Host community and medical advisory panels
2. Improving well-being
Goal: Support psychosocial challenges that accompany a complex condition.
We do this in the following ways:
- Provide one-on-one practical and emotional support
- Facilitate peer support
- Run regular support groups and camps
- Assist families to access additional supports needed at schools, workplaces and places of study