The voice of 12,000 patients : experiences and expectations of rare disease patients on diagnosis and care in Europe : a report based on the EurordisCare3 surveys.

[Paris?] : [Eurordis], [2009]

324 pages : colour illustrations ; 24 cm

"EURORDIS is a non-governmental patient-driven alliance of patient organisations representing more than 423 rare diseases patient organisations in over 43 countries." -- website viewed 10 May 2010.