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3. Position statement on access to care in rare liver diseases: advancements of the European reference network (ERN) RARE-LIVER. Bernts LHP; Jones DEJ; Kaatee MM; Lohse AW; Schramm C; Sturm E; Drenth JPH Orphanet J Rare Dis; 2019 Jul; 14(1):169. PubMed ID: 31287000 [TBL] [Abstract][Full Text] [Related]
4. The pooling of manpower and resources through the establishment of European reference networks and rare disease patient registries is a necessary area of collaboration for rare renal disorders. Parker S Nephrol Dial Transplant; 2014 Sep; 29 Suppl 4():iv9-14. PubMed ID: 25165190 [TBL] [Abstract][Full Text] [Related]
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7. Telemedicine strategy of the European Reference Network ITHACA for the diagnosis and management of patients with rare developmental disorders. Smith M; Alexander E; Marcinkute R; Dan D; Rawson M; Banka S; Gavin J; Mina H; Hennessy C; Riccardi F; Radio FC; Havlovicova M; Cassina M; Emandi AC; Fradin M; Gompertz L; Nordgren A; Traberg R; Rossi M; Trimouille A; Sowmyalakshmi R; Dallapiccola B; Renieri A; Faivre L; Kerr B; Verloes A; Clayton-Smith J; Douzgou S; Orphanet J Rare Dis; 2020 Apr; 15(1):103. PubMed ID: 32334637 [TBL] [Abstract][Full Text] [Related]
8. The current landscape of European registries for rare endocrine conditions. Ali SR; Bryce J; Cools M; Korbonits M; Beun JG; Taruscio D; Danne T; Dattani M; Dekkers OM; Linglart A; Netchine I; Nordenstrom A; Patocs A; Persani L; Reisch N; Smyth A; Sumnik Z; Visser WE; Hiort O; Pereira AM; Ahmed SF Eur J Endocrinol; 2019 Jan; 180(1):89-98. PubMed ID: 30407922 [TBL] [Abstract][Full Text] [Related]
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