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Open Access 01-11-2012 | Meeting abstract

The political empowerment of rare disease patient advocates both at EU and national level

Author: Terkel Andersen

Published in: Orphanet Journal of Rare Diseases | Special Issue 2/2012

Excerpt

Thirty years ago, the patients were left with many uncertainties, no networks and no access. The rarity of the disease made it difficult to identify specialists, little information could be found. Most of the patients were engaged in a longstanding process of obtaining the right diagnosis and treatments when these were available. Significant inequality was the only standard amongst European countries. …

Title: The political empowerment of rare disease patient advocates both at EU and national level
Author: Terkel Andersen
Publication date: 01-11-2012
Publisher: BioMed Central
Published in: Orphanet Journal of Rare Diseases / Issue Special Issue 2/2012
Electronic ISSN: 1750-1172
DOI: https://doi.org/10.1186/1750-1172-7-S2-A33

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