Survey of healthcare experiences of Australian adults living with rare diseases

Author:

Molster CaronORCID,Urwin Debra,Di Pietro Louisa,Fookes Megan,Petrie Dianne,van der Laan Sharon,Dawkins Hugh

Funder

Office of Population Health Genomics

Publisher

Springer Science and Business Media LLC

Subject

Pharmacology (medical),Genetics(clinical),General Medicine

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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