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2. US FoodDrug AdministrationOrphan Drug Act, Pub L. No.97-414198301042014-04-22Washington, DCPublic Lawhttp://www.fda.gov/RegulatoryInformation/Legislation/FederalFoodDrugandCosmeticActFDCAct/SignificantAmendmentstotheFDCAct/OrphanDrugAct/default.htm6P1Pl4k8l
3. AyméSRodwellCScientific Secretariat of the European Union Committee of Experts on Rare Disease2013072014-04-22Brussels, BelgiumEuropean Union2013 Report on the State of t he Art of Rare Disease Activities in Europehttp://www.eucerd.eu/upload/file/Reports/2013ReportStateofArtRDActivities.pdf6P1QBvUyQ
4. European CouncilOfficial Journal of the European Union200907032012-10-24Brussels, BelgiumEuropean UnionRecommendation of 8 June on an action in the field of rare diseases (/C 151/02)http://eur-lex.europa.eu/LexUriServ/LexUriServ.do?uri=OJ:C:2009:151:0007:0010:EN:PDF6BeLXPSAj
5. 'Doctor Google' ending the diagnostic odyssey in lysosomal storage disorders: parents using internet search engines as an efficient diagnostic strategy in rare diseases