Add to ORKGGuidelines are systematically developed statements to assist practitioner and patient decisions about appropri-ate health care for specific clinical circumstances [1]. They concern often complex diagnostic or therapeutic strategies with several possible interventions at each step, where each intervention has to be assessed and compared with other possible interventions at short and long term for efficacy, effectiveness, efficiency (optional), side effects, quality of life, acceptability, benefits/risks ratio. For common diseases, the methodology and the different steps of the guidelines development process have been established and apply the principles of evi-dence-based-medicine. Developing guidelines for rare diseases (RD) is more difficu...
Abstract Rare or orphan diseases often are inherited and overwhelmingly affect children. Many of the...
International audienceBackground: Rare diseases are individually rare but globally affect around 6% ...
The interest to rare diseases has increased in the recent decades. Legislation seeks to facilitate p...
Guidelines are systematically developed statements to assist practitioner and patient decisions abou...
Abstract Background Rare diseases are a global public health priority. Though each disease is rare, ...
Clinical practice guidelines (CPGs) for rare diseases (RDs) are scarce, may be difficult to identify...
International audienceClinical practice guidelines (CPGs) for rare diseases (RDs) are scarce, may be...
RARE-Bestpractices (http://www.rarebestpractices.eu) is a 4-year project (2013-2016) funded by the E...
Abstract Background Rare diseases are a global public health concern, affecting an estimated 350 mil...
Date of Acceptance: 29/05/2015 The research leading to these results has received funding from the (...
Rare diseases affect up to 29 million people in the European Union, and almost 50% of them affect th...
Background and purpose: Rare diseases affect up to 29 million people in the European Union, and almo...
Background and purpose Rare diseases affect up to 29 million people in the European Union, and almos...
International audienceBACKGROUND:Although rare disease patients make up approximately 6-8% of all pa...
Having codes for each and every rare disease (RD) would help European and national health authoritie...
Abstract Rare or orphan diseases often are inherited and overwhelmingly affect children. Many of the...
International audienceBackground: Rare diseases are individually rare but globally affect around 6% ...
The interest to rare diseases has increased in the recent decades. Legislation seeks to facilitate p...
Guidelines are systematically developed statements to assist practitioner and patient decisions abou...
Abstract Background Rare diseases are a global public health priority. Though each disease is rare, ...
Clinical practice guidelines (CPGs) for rare diseases (RDs) are scarce, may be difficult to identify...
International audienceClinical practice guidelines (CPGs) for rare diseases (RDs) are scarce, may be...
RARE-Bestpractices (http://www.rarebestpractices.eu) is a 4-year project (2013-2016) funded by the E...
Abstract Background Rare diseases are a global public health concern, affecting an estimated 350 mil...
Date of Acceptance: 29/05/2015 The research leading to these results has received funding from the (...
Rare diseases affect up to 29 million people in the European Union, and almost 50% of them affect th...
Background and purpose: Rare diseases affect up to 29 million people in the European Union, and almo...
Background and purpose Rare diseases affect up to 29 million people in the European Union, and almos...
International audienceBACKGROUND:Although rare disease patients make up approximately 6-8% of all pa...
Having codes for each and every rare disease (RD) would help European and national health authoritie...
Abstract Rare or orphan diseases often are inherited and overwhelmingly affect children. Many of the...
International audienceBackground: Rare diseases are individually rare but globally affect around 6% ...
The interest to rare diseases has increased in the recent decades. Legislation seeks to facilitate p...