Associations of patients and their family members represent an important point of reference for an exchange of ideas and experiences. They play a fundamental role in the support of patients affected with rare diseases and their families.
Patient Associations and the Centre for Rare Diseases have been involved in a common effort for some time now, and this collaboration will be important for the development of the activities/projects regarding communication and Rare Diseases: namely, "Narrative Medicine" and "Information Service".
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The project "Accessibility and quality of services in Italy for patients with rare diseases: the opinion of the associations"
The National Centre for Rare Diseases has developed a database that can be consulted online of all the associations present nationally and abroad.
This area is dedicated to the documents supplied directly by the associations: testimonials, information, informative publications, etc...
Elenco di documenti normativi ed altri documenti di interesse sulle malattie rare. GUIDA ALL' ESENZIONE
In this area you will find links to national and international web sites of interest. For more information, search the single associations in the section "Associations in Italy and Abroad". .
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