Rare diseases desk

GUIDE TO SERVICES FOR PEOPLE WITH RARE DISEASE THEIR FAMILIES

ITALY ONLY!

I have a rare disease, WHAT DO I DO?

In Italy, according to the Decree n.279 of 18 May 2001, there is a well-defined list of rare diseases for which the National Health System recognizes the exemption. WARNING: According to Italian law currently, not all rare diseases are entitled to the exemption, but only those on the list of Law 279/2001: Each region has identified the hospitals responsible for rare diseases. The law 279/2001 these hospitals are called "reference center". to Law 279/2001 describes the location of the patient with a rare disease in the following terms:

1 - I have a rare disease, WHAT DO I DO?

SUSPECTED DIAGNOSIS:
The patient may have a rare disease added to the list of 27972001: The family doctor directs the patient to a specialist in a public hospital as identified by the regional center responsible for a rare disease. If the diagnosis is not yet certain, the patient can perform tests to monitor the exemption that is completely free, by request of the competent specialist center. In the case of rare disease of hereditary origin, to reach the diagnosis of the patient's illness, even genetic tests performed on his family are free. And the diagnostic 'seeker free whether it is confirmed the suspicion of a rare disease or not.

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