Rare disease days from mocha to radio, 30 ideas to improve life

A radio show hosted by patients, a moka pot that can be squeezed with one hand, a video game to explain how to handle the bag in ostomy and incontinent patients.

A network of tourist facilities with specific aids, managed and aimed at those with special needs dictated by their health condition.

These are some of the solutions to improve the quality of life of people with rare diseases, presented as part of the 'Participated Science' project and illustrated during the conference organized in Rome by the National Committee for Rare Diseases (Cnmr) and by Uniamo (Italian Federation of Rare Diseases) on the eve of World Rare Disease Day.

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Rare diseases, Bambino Gesù participates in 20 European networks - Health & Wellness

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    Rare diseases, recalled Domenica Taruscio, former Director of the Cnmr and creator of the project, "are characterized by delays in diagnosis to treatment costs which are often high; by social unease which often generates marginalization and loneliness by the scarce information available".

Hence the importance of improving their lives with small daily tricks. President of Unite.

"Some of the ideas have already been implemented, others have only been conceived, and all will be examined by a multidisciplinary scientific committee", explains Marco Silano, acting director of the Cnmr.

The goal, he specifies, "is that anyone who wants to do it can take advantage of a specific aid or make a prototype of it at the service of many".

The project, concluded Sergio Iavicoli, Director General of Communications of the Ministry of Health, "offers not only practical solutions, but goes in the direction of an enlargement of citizens called to contribute all together to improve the lives of rare patients and their caregivers" .