Search results - 5 results

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

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

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: Non-peer reviewed scientific publication Authors: E. Swinnen Source: Medi-Sfeer, Volume 420, Number 25, p.23- 25 (2013) ISBN: 1372-0600 Keywords: Inserm Orphanet Rare diseases ...

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

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 practice population. ...

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