The European Organisation for Rare Diseases, EURORDIS, is a patient-driven alliance of patient organisations and individuals active in the field of rare diseases.
Eurordis’ mission is to build a strong pan-European community of patient organisations and people living with rare diseases, to be their voice at the European level, and – directly or indirectly – to fight against the impact of rare diseases on their lives.
To this end, Eurordis undertakes activities on behalf of its members, notably in favour of:
Empowering rare disease patient groups
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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 and continue to advocate their need to overcome common obstacles. Through the publication of this book, “The Voice of 12,000 Patients”, the patient’s perspective can go beyond patients’ anecdotes and be additionally represented by the analysis of data collected through theEurordisCare2 and EurordisCare3 surveys. 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. SOURCE
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