Orphanet is committed to maintain, update and develop an Internet information service dedicated to rare diseases and orphan drugs. Orphanet is committed to maintain an access that is both free and free of charge.
Data collection and dissemination of information abide by the legal provisions in force in the countries concerned: the professional code of ethics, any law on computing and liberties, on intellectual property rights, electronic data protection and any law or regulation applicable. The French personal data protection committee (Commission Nationale de l'Informatique et des Libertés; CNIL) gave a favourable opinion for the creation of Orphanet on 5 May 1997. Whenever someone's name is mentioned, this person has given his/her authorisation to quote his/her name.
The information disseminated and the services developed comply with the codes and recommendations issued by the ad hoc committees recognized at the national or international level, especially concerning respect of patients' rights, respect of the confidentiality of the information, the practice of on-line medicine, and the safety of networks. Up to now, the codes and charters to which Orphanet has adhered are the following :
- the HONcode 'HONConduct385483' (www.hon.ch/HONcode)
- the eHealth Code of Ethics (ihealthcoalition.org/ethics/ehcode.html)
- the 'Guidelines for Medical and Health Information Sites on the Internet' from the American Medical Association (www.ama-assn.org/ama/pub/category/1905.html)
- the recommendations from the French National Board of Physicians (the Conseil National de l'Ordre des Médecins). (www.conseil-national.medecin.fr)
- the Methodological guidelines for the elaboration of a written document for Medical and Health information from the Haute Autorité de la Santé (2008) (www.has-sante.fr)
The database is under the supervision of a Management Board, a Steering Committee and an International Advisory Board and in some countries by a National Advisory Board. Data Collection, validation and publication is ruled by the Orphanet Standard Operating Procedures. All the information available to the public is validated by a member of the committee before it is put-on line. The inventory of rare diseases is updated once a month. The information in the directory of resources is updated once a year. The encyclopaedia is updated at various intervals: all texts mention the last update.