The Voice of 12,000 Patients

 

Rare diseases are often chronic, progressive, degenerative, life-threatening and disabling diseases. Many rare disease patients are denied their right to the highest attainable standard of health. To go beyond patients’ anecdotes and investigate experience-based opinions in a quantitative way, the EurordisCare2 and EurordisCare3 surveys were conducted. These surveys investigated patients’ experiences and expectations regarding access to diagnosis and to health services, for a variety of significantly relevant rare diseases across Europe. The results are reported in this book. "The Voice of 12,000 Patients" is intended as an information and advocacy tool for patients, patient organisations, health professionals, and health authorities.
 
Available in electronic format or in bound paperback format.
 
Length: 324 pp.
 
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Languages: English

 

 
 
The voice of rare disease patients in EuropeEURORDIS Bringing together patients, families and experts to share experiences in a moderated multilanguage forum, RareConnect is a EURORDIS initiative RareConnect An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases