Found: 5
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High quality, patient centred and coordinated care for Alstrom syndrome: a model of care for an ultra-rare disease.
- Published in:
- 2015
- By:
- Publication type:
- journal article
Dispelling myths about rare disease registry system development.
- Published in:
- Source Code for Biology & Medicine, 2013, v. 8, n. 1, p. 2, doi. 10.1186/1751-0473-8-21
- By:
- Publication type:
- Article
EURO-WABB: an EU rare diseases registry for Wolfram syndrome, Alström syndrome and Bardet-Biedl syndrome.
- Published in:
- BMC Pediatrics, 2013, v. 13, n. 1, p. 1, doi. 10.1186/1471-2431-13-130
- By:
- Publication type:
- Article
EURO-WABB: an EU rare diseases registry for Wolfram syndrome, Alström syndrome and Bardet-Biedl syndrome.
- Published in:
- 2013
- By:
- Publication type:
- journal article
The involvement of patients in developing clinical guidelines.
- Published in:
- 2012
- By:
- Publication type:
- Abstract