Sufferers of a rare form of cancer claim they are "unfairly overlooked" when it comes to receiving emotional support.
Just one in 31,000 people suffer from Gorlin Syndrome – a condition which can leave them needing repeated surgery to remove skin cancer lesions from their body or cysts from their jaw.
While a new survey showed that 48% of patients have had to endure more than 20 operations to manage their condition, just 15% said they had been offered counselling to help them cope with their diagnosis.
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The research also found 51% of sufferers needed surgery every few months, with 49% saying this had an emotional impact on them.
The results of the survey were disclosed by the Gorlin Syndrome Group, a charity set up to provide guidance and information to patients and their families, at the same time as the research was presented to the European Association of Dermato Oncology Congress in Hamburg, Germany.
Margaret Costello, the co-founder and secretary of the Gorlin Syndrome Group, said: "Quality of life is a real issue for people with this disease, not least because it requires such frequent surgery as well as regular hospital check-ups.
"While emotional wellbeing is a core part of cancer care elsewhere, it is being unfairly overlooked in this group of people and must be addressed."
Gorlin Syndrome is characterised by the development of multiple jaw cysts, known as keratocysts, as well as basal cell carcinomas – cancerous lesions in the skin's basal cells.
There are almost 100 features of the condition people can develop, including benign tumours which affect their heart function or a form of brain tumour called medulloblastoma.
The call for more emotional support for sufferers was echoed by Rebecca Mulligan, 23, who was diagnosed with Gorlin Syndrome at the age of nine.
Miss Mulligan, from East Kilbride, South Lanarkshire, inherited the condition from her mother and has also passed it on to her two-year-old daughter, Georgia.
She said: "I think it would be really helpful if there was more understanding of the condition. I'm a healthcare support worker, so I see what kind of support other people can get.
"Addicts can get help really easily but we're here, with a proper condition, and there's no help we can get."
The single mother gets jaw cysts as a result of the condition and has already had to have 10 operations to have these removed.
Miss Mulligan undergoes check-ups at the Southern General Hospital in Glasgow to see if she has developed any new jaw cysts, which she described as being "hard or soft lumps in the mouth, which give a horrid taste".
She so far has had about 10 operations but has never received any emotional support afterwards.