Survey of healthcare experiences of Australian adults living with rare diseases
Author:
Funder
Office of Population Health Genomics
Publisher
Springer Science and Business Media LLC
Subject
Pharmacology (medical),Genetics(clinical),General Medicine
Link
http://link.springer.com/content/pdf/10.1186/s13023-016-0409-z
Reference41 articles.
1. EURORDIS. What is a rare disease? European Organisation for Rare Diseases; 2010. http://www.eurordis.org/sites/default/files/publications/Fact_Sheet_RD.pdf . Accessed 18 March 2016.
2. Orphanet. The portal for rare diseases and orphan drugs. About rare diseases. 2012 [cited 2016 19 February]. Available from: http://www.orpha.net/consor/cgi-bin/Education_AboutRareDiseases.php?lng=EN .
3. Barrera LA, Galindo GC. Ethical aspects on rare diseases. In: Posada de la Paz M, Groft SC, editors. Rare diseases epidemiology. Advances in experimental medicine and biology, vol. 686. Netherlands: Springer; 2010. p. 493–511.
4. Hordinsky M, Donati A. Alopecia areata: an evidence-based treatment update. Am J Clin Dermatol. 2014;15(3):231–46. PubMed PMID: 25000998.
5. Bogershausen N, Wollnik B. Unmasking Kabuki syndrome. Clin Genet. 2013;83(3):201–11.
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