title: Access to information supporting availability of medicines for patients suffering from rare diseases looking for possible treatments: the EuOrphan Service.
abstract: Currently in Europe, approximately 30 million people suffer from rare diseases, and a major problem is that many patients do not have access to quality healthcare for their disorders. Moreover, there is also a lack of quality information and a networking system aimed at supporting interaction among patients, clinicians, researchers, pharmaceutical industries, and governmental bodies. The purpose of this article is to inform physicians, public health care professionals, and other health care providers about EuOrphan service, the aim of which is to ensure easier access to quality information on rare diseases and their treatment. A set of web-based services is available at www.euorphan.com where information for target-users on treatments and products available worldwide for rare disease care as well as indications about healthcare centers are provided. Moreover, the service aims at providing consultancies for pharmaceutical companies to ultimately support the European legislation in bringing new drugs of a high ethical standard to the market and to exert a positive impact on the large population of patients suffering from rare diseases in Europe. The services provided by EuOrphan can facilitate concrete networking among patients, patient associations, doctors, and companies and also support the organization of clinical trials. In this perspective, EuOrphan could become a very valuable tool for globalizing the information about the availability of treatment (authorized or under development) of orphan patients.
authors.affiliation: Mykolas Romeris University, Ateities 20, Vilnius, Lithuania. donatasstakisaitis@vvkt.lt
authors.forename: Donatas
authors.initials: D
authors.lastname: Stakisaitis
authors.forename: Indre
authors.initials: I
authors.lastname: Spokiene
authors.forename: Jonas
authors.initials: J
authors.lastname: Juskevicius
authors.forename: Konstantinas Povilas
authors.initials: KP
authors.lastname: Valuckas
authors.forename: Paola
authors.initials: P
authors.lastname: Baiardi
mesh_terms: D022126:Access to Information; D002986:Clinical Trials as Topic; D019992:Databases as Topic; D005060:Europe; D005062:European Union; D006296:Health Services; D006297:Health Services Accessibility; D006801:Humans; D020407:Internet; D015337:Multicenter Studies as Topic; D009965:Orphan Drug Production / Q000331:legislation & jurisprudence; D035583:Rare Diseases / Q000188:drug therapy*; D014481:United States