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Rare diseases: understanding this public health priority
To clarify the concept of rare diseases as a public health issue, Eurordis produced a short document covering all aspects of rare diseases: definition of the concepts involved; characteristics and specificities of rare diseases; statistics; description of the social, medical and financial impact of rare diseases on the lives of patients and their families; need for raising public awareness; need for appropriate funding and for appropriate health systems and professional care; and the absolute necessity to empower patients to emerge from their isolation.
Eurordis encourages rare disease activists to make use of this document, particularly at the national level, in work promoting rare diseases as a public health priority.
Length: 14 pp.
Document also available in Hungarian >
Other languages: See also the French, Spanish, German or Italian sections of our website for translations in those languages.
document:
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The voice of rare disease patients in Europe
The international voice of people living with rare diseases
Bringing together patients, families and experts to share experiences in a moderated multi-language forum.
The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.
An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiative
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 initiative
The international voice of people living with rare diseases
Bringing together patients, families and experts to share experiences in a moderated multi-language forum.
The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.
An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiative
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 initiative