Orphanet overhauls its orphan drugs section to improve and extend accessibility to information
Always striving to improve access to its rich database of information and resources, Orphanet, the European portal for information on rare diseases and orphan drugs, has recalibrated its search engine to render data on Orphan Drugs more accessible from the website’s homepage. In addition to the existing options to search by drug, molecule, or by disease, Orphanet has added four new sub-tabs that improve the visibility of information pertaining to orphan drugs, allowing users to search by a wider range of criteria. The new sub-tabs permit users to view alphabetically the list of all orphan designated products (including each geographical zone for which a substance has been granted a designation). Users can also now obtain an alphabetical list of orphan-designated products with marketing authorisations (also including information on each geographic region in which authorisation has been issued). Alphabetical lists of substances (with related trade name(s) cross-listed), and drug trade names (cross listed with corresponding molecule or active ingredient) are also now available from Orphanet’s homepage. All data pertaining to orphan drugs within the Orphanet database have been extracted from official sources and include all substances which have been granted an orphan designation for disease(s) considered rare in Europe. The database also includes information on products without orphan designation but which have an indication for a rare condition. Furthermore, with the new advanced search options, users may refine their search by sponsor, MA holder and by ATC category.
The results pages have also been redesigned to clearly separate substances from trade names, clarifying that trade names are used solely for products granted marketing authorisation, whereas substances with orphan designation status (prior to marketing authorisation) are referred to by their biochemical substance or molecule. Finally, the orphan designation pages have been enlarged to include information on the sponsor, and the marketing authorisation pages now offer details on the MA holder. These new features are available in the five languages of the Orphanet website.
On 11 January in Seville, the opening ceremony was held for Spain’s first official Master’s programme in rare diseases. The curriculum, coordinated by the Universidad Pablo de Olavide and Universidad Internacional de Andalucía, provides a gradúate-level multidisciplinary overview of the field of rare diseases. The one-year programme offers students theoretical and practical training from national and international experts in the field, including Francesc Palau Martínez (scientific director of the Biomedical Network Research Centre on Rare Diseases CIBERER), Manuel Posada de la Paz (director of Rare Disease Research at the Institute of Health Institute Carlos III), Carmen Ayuso (Clinical Genetics Service, Fundation Jimenez Díaz), Leonardo Salviati (Clinical Genetics Unit, University of Padova), Guillermo Antiñolo Gil (director of Clinical Genetics Unit of Hospital Virgen del Rocio) and Sandra Jackson (Neurologie, Uniklinikum CG Carus, Germany). The course is open to all students with a first degree in the sciences, with priority given to graduates in biotechnology, biology, pharmacology, biochemistry or medicine. 
Health ministers in England have agreed to national commissioning of services, effective 1 April 2010, for patients with the following disorders: neuromyelitis optica; Biedl-Bardet syndrome; Barth syndrome; Xeroderma pigmentosum; type 2 neurofibromatosis; cryopyrin associated periodic syndrome (Muckle Wells disease); and glycogen storage type V disease (McArdle disease). National commissioning establishes national centres of expertise for a specific disease and streamlines funding to one centralised source rather than being scattered amongst different local budgets.
