Kate and Andrew Hay have struggled to find support for their 10-year-old son Charlie who was diagnosed with NF Type 1 two years ago.

The condition is characterised by the growth of benign tumours called neurofibromas that can grow anywhere in an NF sufferer.

“There’s about 7000 people in Australia who are aware they have the disease and we’ve found it difficult to find information and support services living in regional Victoria,’’ Mrs Hay said.

The family had been using the internet as well as trips to Melbourne to source their information and treatment options, but said there was a need to build a local support group.

“We’re hosting the first group meeting in the hope of encouraging others to come along and share their stories and information about living with NF,” Mrs Hay said.

“I would encourage anyone living with NF or family members of an NF sufferer, to come along and experience the benefits of a support group.”

There are three types of NF – types 1 and 2 and schwannomatosis.

NF1 affects about one in every 3000. NF2 and schwannomatosis affect about one in every 35,000.

In NF1, neurofibromas commonly grow on the skin or on the optic nerve, which can result in blindness.

The picnic meeting will be held in the Rosalind Park rotunda from noon on Sunday, December 12.

Mrs Hay can be contacted on 0400 607 742 or email katehay4@bigpond.com

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