THE isolation of knowing your child has a rare disease but having nobody to turn to has prompted a Manoora mum to form a support group for families.
Meagan Cross said for six agonising months she knew something was wrong with her daughter Molly, 18 months, before doctors diagnosed the rare neuro-genetic disorder Angelman Syndrome, characterised by seizures, balance problems and lack of speech.
Now she is on a mission to raise awareness about how common "rare" diseases are, 8000 known diseases at last count, affecting up to 10 per cent of the population.
She also wants to provide hope and information for other parents like herself.
"It's a way of coping for myself as well," Mrs Cross said.
"I hope by doing this I might find other parents who don't fit in with all the more common diseases, like the cerebral palsy and autism societies, who feel as lonely and isolated as I do.
"Most of the doctors have never even seen what Molly has before."
She said rare diseases could range from fatal ones to those as simple as causing eyesight problems, but all were scary if there was not much known about them.
Mrs Cross has organised an Esplanade walk to mark World Rare Disease Day on February 28, as well as raise awareness and meet parents, family members and carers interested in setting up a support group.
Walkers will set off for the pirate ship from the northern side of the Lagoon at 9.30am, and return for a sausage sizzle barbecue.
Prizes and raffles will be held and gold coin donations sought for the SMILE Foundation, a charity that supports research into rare childhood diseases and helps affected children and their families.
More details, call Mrs Cross on 0419 545 521 or email meags@bigpond.net.au
