Home - Children's Tumour Foundation of Australia

NF Community Info Day

The Children's Tumour Foundation is proud to present an exciting new all-inclusive hybrid community information day on Saturday 20 August for NF patients and families, researchers, clinicians, friends, and supporters who have a connection to NF.

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Research Study Registrations Now Open

Registrations are now open for adults with neurofibromatosis type 1 (NF1) to participate in the international NF1 cutaneous neurofibroma consortium project with Associate Professor Tracey Dudding-Byth.

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2022 Australian Neurofibromatosis Clinical Symposium

An opportunity for health professionals and researchers to come together (in-person and virtual) to network and discuss the latest in medical management, treatment and research into neurofibromatosis in Australia and around the globe.

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EVERY 3 DAYS A CHILD IS BORN WITH NF IN AUSTRALIA

Neurofibromatosis (NF) is a set of three genetic conditions that cause tumours to form on nerves throughout the body, including the brain and spine. There is no cure and treatment options are limited.

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WANT TO KNOW MORE ABOUT THE MEK TRIAL?

Want to know whether you or your child is eligible for the TiNT MEK Inhibitor Clinical Trial in Australia? Click the button below to find out more.

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HELPING ANYONE IMPACTED NAVIGATE THE NF JOURNEY

about us

Discover who we are, what we do and how your support can help change lives.

WHAT WE DO

NEUROFIBROMATOSIS

Learn about the genetic condition that affects 1 in every 2,500 Australians

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LIVING WITH NF

NF is a lifelong medical condition, but the impact of NF changes with each stage of life.

ON THE JOURNEY

Are you thinking it might be Neurofibromatosis, but yet to receive a diagnosis?

WE CAN HELP

TOGETHER WE CAN #CONQUERNF

“Parenting a child with a genetic condition can be a stressful and painful journey. Maintaining hope for a better future for the child you love is critical, and at the centre of that hope is research. Knowing that research is ongoing to better understand and treat NF keeps the hope alive for so many of our families."

NF Hero Mum

DONATE NOW OTHER WAYS TO SUPPORT

Libby’s NF2 journey began when she was 4 years old. What should have been a simple optometrist appointment for a lazy eye became a diagnosis of NF2 and a brain tumour. At just 4 years of age, one week after her first MRI, Libby was scheduled to have brain surgery. One of the tumours in her brain was causing her eye to push through the socket.

Every year since her diagnosis, Libby has faced another setback. In 2018, she required spinal surgery to remove an egg sized tumour from the lumbar region of her spine. In 2020, Libby had her routine MRI & her parents learnt that the tumour near her brainstem was infiltrating more nerves than originally thought. There is now no medical treatment available for her most dangerous and unstable tumour.

As parents, Cam and Jen crave normality but continue to fundraise and share their experiences in order to help families like theirs and to help children like Libby, find a better “normal”.

So, what’s within your power to help kids like Libby?

READ LIBBY'S STORY HERE