한국This website is the result of a collaboration between the Paediatric Rheumatology InterNational Trials Organisation (PRINTO) and the Paediatric Rheumatology European Society (PRES). Funding to support the website was obtained from a European Union project known as SHARE.
The goal of the "Single Hub and Access point for paediatric Rheumatology in Europe" (acronym SHARE, project number 2011 1202) project is to provide every country with recommendations for the care of children with rheumatic diseases.
PRINTO (www.printo.it) is a not-for-profit international public network established in 1996 by 14 European countries (now around 60 countries, with 550 centres and around 1180 members worldwide), the goal of which is to foster, facilitate and co-ordinate the development, conduct, analysis and reporting of studies to evaluate efficacy and safety of drug therapies, quality of life and outcome for children with paediatric rheumatic diseases. PRINTO is composed of academic and/or clinical centres actively engaged in the research and clinical care of children with paediatric rheumatic diseases.
PRES (https://www.pres.eu/) is an international scientific society for European healthcare professionals (and non-European colleagues as associate members) working in the field of paediatric rheumatology. The mission of PRES is to promote knowledge of paediatric rheumatic diseases, stimulate research in the field, disseminate knowledge through scientific meetings and publications, provide guidelines and standards for good clinical practice, provide guidelines and standards for the training of doctors and allied health professionals in the practice of paediatric rheumatology.
PRINTO and PRES collaborate for research-related purposes.
The website is divided into three sections:
The goal of the first section is to inform families about the characteristics of paediatric rheumatic diseases. This section was specifically written by a group of physicians and health professionals belonging to PRINTO/PRES/SHARE and was revised by representatives of various family associations ().
The second section provides the contact details for paediatric rheumatology centres whose physicians are members of PRINTO and/or PRES. The information has been gathered through a questionnaire devised by the SHARE coordinators, PRINTO and PRES that was sent to paediatric rheumatology centres around the world. This list is updated regularly but does not claim to be exhaustive. The list is periodically revised by PRINTO and the PRINTO national coordinators.
The third section lists the family support associations that can be found in various countries. The main purpose of these organizations is to give advice regarding everyday problems and difficulties often encountered by families.
