Résultats de la recherche - 4 results

Eight years after an international workshop on myotonic dystrophy patient registries: case study of a global collaboration for a rare disease.

Richard Roxburgh; Benedikt Schoser; Sonia Segovia; Andriy Shatillo; Simone Thiele; Ivailo Tournev; Baziel van Engelen; Stanislav Vohanka; Hanns Lochmüller Source: Orphanet J Rare Dis, Volume 13, Issue ...

What can the CF registry tell us about rare CFTR-mutations? A Belgian study.

Publication Type: Peer reviewed scientific article Authors: De Wachter, E; Muriel Thomas; Simeon Wanyama; Seneca, S; Malfroot, A Source: Orphanet J Rare Dis, Volume 12, Issue 1, p.142 (2017) ...

Orphanet België en nationaal register zeldzame ziekten

Publication Type: Scientific poster, presentation or proceeding Authors: Elfriede Swinnen Source: RaDiOrg Algemene Vergadering en Ledendag, NA, Issue RaDiOrg, NA (2013) Keywords: België EN Orphanet ...

General Practice Care for Patients with Rare Diseases in Belgium. A Cross-Sectional Survey.

(ii) characteristics of one to three most recently seen patients. Rare diseases were matched against Orphanet (www.orpha.net). GP encounter frequency and patients’ age were compared to the total general ...

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