progetto insieme
Project approved by the Ministry for Social Solidarity:
“TOGETHER” Social meeting days for patients suffering from rare diseases
ObjectivesOne of the immediate needs of all associations involved with rare diseases is to know in details the patients problems, either physical, psychological or regarding social relationships, so as to tackle them in order of importance. Therefore, besides the usual support for research and information, UNIAMO seeks direct contacts with patients and their families, to share information about new needs and find the best way to fulfill them. But sharing is not only necessary between the Association and the consumers, it is also necessary between patients. Hence by realizing this project, the following objectives can be pursued:
- to organize opportunities for patients of all ages affected by rare deseases to meet and socialize
- to organize events where patients’ families can share information and support each other as they are brought together by similar problems even if they might be separated geographically by large distances
- to organize, during the meeting days, seminars that take an in depth look at each of the macro typologies of rare diseases and improve the collaboration between national association
- to create connections between groups of patients sharing the same macro-pathology - allowing patients and families to physically meet at a specific place and time to welcome all proposals aimed at improving the services provided by the associations.
The purpose of the project, originating from the previous considerations, is to organize sharing and learning experiences for patients affected by rare diseases. Specifically, four week-ends (Saturday and Sunday) will be organized, one for every macro-typology:
rare autoimmune diseases/ rare urologic diseases/ rare metabolic diseases/ rare endocrinologic diseases
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