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Rare diseases in Europe: does data sharing hold the key to progress?

Smart Health looks at how the EU s new European Health Data Space aims to improve care and treatment for patients suffering from rare diseases through better data and information sharing.

Bart leroyProfessor of ophthalmology at ghent universityEuropean reference networksStrasbourg university hospitalEuropean unionEuropean health data spaceGenetics at ghent university hospitalGhent university medical research centreEuropean referenceCase patient managementMedical genetics departmentStrasbourg universityGhent universityMedical research centreElfride de baereMedical genetics

World Rare Disease Day: Statement by Commissioner Stella Kyriakides, Brussel

Today, more than 6,000 rare diseases are affecting up to 36 million people in the EU. For those living with rare diseases - many of them children - quality …

Stella kyriakidesEuropean reference networksEuropean health data spaceEuropean health unionVirtual academyWorld rare disease dayFood safetyFrench presidencyReference networksJoint actionClinical patient managementCross border healthcare directiveEuropean referenceMore information factsheetRare diseases european reference

Access inequality for European children to newborn screening

Early detection and diagnosis of fatal or disabling diseases in infants is every family’s right, regardless of where they live in Europe, experts say.

Johan prevotEuropean society for immunodeficienciesMember of the european parliament sirpa pietikMembers of the european parliamentEuropean reference networksMember of the european parliament cyrusCharles rivers associatesMember of the european parliament steliosMember of the european parliament deirdre cluneEuropean parliament deirdreEuropean parliament cyrusEuropean parliament steliosEuropean parliament sirpa pietikEuropean societyRare diseasesExecutive director

Location lottery of newborn screening programs

Early detection and diagnosis of fatal or disabling diseases in infants is every family’s right, regardless of where they live in Europe, say campaigners.

Isabelle meytsCyrus engererJohan prevotStelios kympouropoulosSirpa pietikDeirdre cluneEuropean society for immunodeficienciesCharles rivers associatesMembers of the european parliamentEuropean reference networksWorld childrenProfessor isabelle meytsEuropean societyNovartis geneEuropean parliamentEuropean reference

33 طالب يؤدون امتحان شهادة إتقان اللغة الإنجليزية إلكترونيًا بجامعة سوهاج

33 طالب يؤدون امتحان شهادة إتقان اللغة الإنجليزية إلكترونيًا بجامعة سوهاج
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United kingdomLilly hashemIsmail abdulLaila hashemUniversity of cambridgeSohag universityEnglish centerInitial mastery englishUniversity sohagSecretary general universityGeneral centerAbdul creatorEuropean reference