General information
Children’s Tumour Foundation website (Neurofibromatosis NF) Australia. This excellent website provides information and support services for children, adults and their families impacted by neurofibromatosis, including schwannomatosis. Besides the general information about what NF is, it has a section on current research trials, where to find specialised care centres, a webinar page, and information how to connect with healthcare professionals and other community members impacted by NF.
This fact sheet provides some statistics on NF.
You can order a health management kit from the Children’s Tumour Foundation to record symptoms, medical appointments and reports. It is tailored to children or adults and neurofibromatosis type.
Flicker of Hope is an Australian research and awareness-raising charity for NF. Besides raising money for NF research projects the website provides a few short explanatory videos explaining what neurofibromatosis and how it can affect individuals.
The National Institute of Neurological Disorders and Stroke (NINDS) is a US-based organisation. Their website provides detailed information in regard to clinical criteria, symptoms and tumour growth. It lists the complications of neurofibromatosis and how it is diagnosed and treated.
Specific information – Neurofibromatosis type 1 (NF1)
This fact sheet covers the basics of neurofibromatosis type 1, the risks for patients and family members and how they can be managed. It has been developed by eviQ, a NSW Government initiative to provide evidence-based information on a variety of cancer treatment at no cost.
The Children’s Tumor Foundation in the US produced a NF Knowledge Series. Seven videos cover a range of topics such as new therapies for NF1, cognitive research in NF1, how to talk to a child about an NF1 diagnosis and specifics on the diagnosis of Schwannomatosis.
Specific information – Schwannomatosis/NF2-related schwannomatosis
The Children’s Tumour Foundation website (Neurofibromatosis NF) Australia has a specific page on schwannomatosis and NF2-related schwannomatosis. It explains signs, symptoms, types of tumours as well as the monitoring and treatment options that are available. The website also has a link to the diagnostic criteria.
This fact sheet covers the basics of NF2-related schwannomatosis, the risks for patients and family members and how they can be managed. It has been developed by eviQ, a NSW Government initiative to provide evidence-based information on a variety of cancer treatment at no cost.