Abstract
Background The scarce knowledge of rare diseases among family pediatricians and general practitioners who operate at local level and in frequent contact with rare disease patients is seen in Italy as one of the causes leading to delay in diagnosis and to the lack of reference to a centre of competence. A project aimed at the training of these health professionals was started in February 2009 by the Italian Federation of Rare Diseases UNIAMO with the societies and federations of family paediatricians and general practitioners with the support of FARMINDUSTRIA, Association of Pharmas. The main aims are to train participants to develop a new diagnostic sensitivity but also in the high complexity care of the RD patient (child or adult), to lay the groundwork for the establishment of a handover protocol which allows the RD patients and their family to benefit from a real continuity of care from pediatric to adult age, being this shift of competence now completely random and to create trainers able to transfer this knowledge and these messages in different contexts, at first regional and then provincial, through the organisation of local educational courses as part of the required upgrading of the different health professionals.
Highlights
The scarce knowledge of rare diseases among family pediatricians and general practitioners who operate at local level and in frequent contact with rare disease patients is seen in Italy as one of the causes leading to delay in diagnosis and to the lack of reference to a centre of competence
A project aimed at the training of these health professionals was started in February 2009 by the Italian Federation of Rare Diseases UNIAMO with the societies and federations of family paediatricians and general practitioners with the support of FARMINDUSTRIA, Association of Pharmas
The main aims are to train participants to develop a new diagnostic sensitivity and in the high complexity care of the RD patient, to lay the groundwork for the establishment of a handover protocol which allows the RD patients and their family to benefit from a real continuity of care from pediatric to adult age, being this shift of competence completely random and to create trainers able to transfer this knowledge and these messages in different contexts, at first regional and provincial, through the organisation of local educational courses as part of the required upgrading of the different health professionals
Summary
The scarce knowledge of rare diseases among family pediatricians and general practitioners who operate at local level and in frequent contact with rare disease patients is seen in Italy as one of the causes leading to delay in diagnosis and to the lack of reference to a centre of competence.A project aimed at the training of these health professionals was started in February 2009 by the Italian Federation of Rare Diseases UNIAMO with the societies and federations of family paediatricians and general practitioners with the support of FARMINDUSTRIA, Association of Pharmas.The main aims are to train participants to develop a new diagnostic sensitivity and in the high complexity care of the RD patient (child or adult), to lay the groundwork for the establishment of a handover protocol which allows the RD patients and their family to benefit from a real continuity of care from pediatric to adult age, being this shift of competence completely random and to create trainers able to transfer this knowledge and these messages in different contexts, at first regional and provincial, through the organisation of local educational courses as part of the required upgrading of the different health professionals. The Italian project to increase health professionals’ training and awareness on rare diseases Background The scarce knowledge of rare diseases among family pediatricians and general practitioners who operate at local level and in frequent contact with rare disease patients is seen in Italy as one of the causes leading to delay in diagnosis and to the lack of reference to a centre of competence.
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