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What are Rare Diseases?



WHAT THEY ARE
A disease is considered rare when it affects no more than 5 individuals among 10,000 persons. However, the low prevalence of this pathologies does not mean that there is a small number of patients affected by a rare disease. Only in Italy there are thousands of individuals affected by rare diseases and in Europe there are tens of thousands. The number of known and diagnosed rare diseases ranges from 7,000 to 8,000. Considering rare diseases as a whole, and not singularly, helps highlighting and recognizing a series of healthcare problems and planning focused public health actions involving groups of population with common needs, safeguarding at the same time their peculiarities and differences.

ORPHAN DRUGS
The topic...

Published 03-19-2008 in Rare Diseases , last update 05-22-2008 More...

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Rare Diseases exempt from contribution in Italy



The Italian law includes a well defined list of rare diseases considered by the National Health System (SSN-Servizio Sanitario Nazionale) exempt from patient contribution. Only the low prevalence pathologies included in the list attached to the D.M./M.D. 279/2001 envisage the exemption from patient contribution to the healthcare expenses. The National Rare Diseases Register has been created in the Italian National Institute of Health (ISS-Istituto Superiore di Sanità) in compliance with the art.3 of the Decree. All pathologies included in the register refer to the institutional regulation of the national network of rare diseases and of the exemption from contribution to the healthcare expenses (G.U. n.160 " 07-12-2001 " Suppl. Ord. n.180/L). To verify if a low prevalence...

Published 03-19-2008 in Rare Diseases , last update 05-16-2008 More...

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I have a Rare Disease? What do I have to do?

 There are several steps to be followed to understand the world of rare diseases: from the diagnosis to the care centres and the Associations of patients.

1) Suspect of rare disease.
Reaching the diagnosis of a rare disease often requires a long time. For this reason general practitioners should be trained and informed in order to be able to raise a diagnostic suspicion and address the citizen to the specialized centres included in the National Rare Diseases Network. If the general practitioner suspects that the patient is affected by a rare disease, he/she should address him/her to an hospital presidium included in the national network of rare diseases. The patient, then, will be able to take all needed tests free of charge.


2) Verification...

Published 03-19-2008 in Rare Diseases , last update 05-16-2008 More...

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