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.