A new survey has found that almost two thirds of Northern Irish GPs are forced to surf the internet for information on treating patients with rare medical disorders.
The study of 232 GPs, more than 20 families and five genetic disorder experts across Ireland and Ulster demonstrated the urgent need for a support centre for people diagnosed with such disorders, RehabCare, who carried out the research, said.
The vast majority of these disorders affect children and many doctors are resorting to looking up facts on websites for sufferers and their families.
“Many of the families that were consulted reported negative experiences of receiving information about rare disorders, including worst-case scenarios,” RehabCare chief executive Angela Kerins said.
“Doctors also highlighted the issue of the lack of information available, with more than three-quarters experiencing difficulties in providing information to families about rare disorders. A centre of expertise, supported by a website and guided by specialist health professionals and families, is therefore a key necessity.”
According to the European Union a rare disorder is defined as one that affects five or less people in every 10,000 and there are about 5,000 to 7,000 different types.
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