Résultats de la recherche - 6 results
Orphanet Belgium activities: January 2024 newsletter on Orphanet and OD4RD projects
Publication Type: Popular-science publication (vulgarising publication) Authors: Annabelle Calomme Source: Newsletter, Sciensano, Brussels, Belgium (2024) Keywords: OD4RD Orphanet Rare diseases ...
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) ...
The health and economic burden of haemophilia in Belgium: a rare, expensive and challenging disease
Orphanet J Rare Dis, Volume 9 (2014) Keywords: Belgium Blood Coagulation Factors Cohort Studies Cost of Illness Hemophilia A Humans Abstract: BACKGROUND: Haemophilia is a rare hereditary haemorrhagic disease ...
Orphanet: een portaal voor zeldzame ziekten
Publication Type: Popular-science publication (vulgarising publication) Authors: Elfriede Swinnen Source: Medi-Sfeer, Volume 420, Number 25, p.23- 25 (2013) ISBN: 1372-0600 Keywords: Inserm 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 ...