The voice of 12,000 patients : experiences and expectations of rare disease patients on diagnosis and care in Europe. In Medicínsky monitor. ISSN 1335-0951. Bratislava : BONUS C.C.S., 2009, 2009, č. 2, s. 42. Review: The voice of 12,000 patients. Experiences and expectations of rare disease patients on diagnosis and care in Europe. Eurordis, 2009. ISBN 978-2-9530318-1-2.