Anxiety can be made worse if the disorder is not diagnosed, she said, as people feel even more isolated.
Ms Hurst's charity does not get any funding from the government, relying on fundraising and donations. She puts on barbecues, Christmas parties and holidays for people with WS and their families.
"I think the government should do more," she says. "It can be difficult when you see the surge of funding for the tidal wave of autism.
"WS people are just as needing as other people with mental disorders and in many ways they are more needing of support and attention, and that all comes at a price."
People with WS do not have a lower life expectancy than other people, and some may go on to get jobs, most often in a voluntary capacity, where their helpful nature can be useful.
Dr Debbie Riby, senior lecturer in the Department of Psychology at Durham University, has been working on the disorder for 12 years.