00:00For about 30 years, Alexion has been committed to research to develop innovative and transformative therapies for people affected by rare diseases.
00:17For about 15 years, we have started the development of a substitutional enzymatic therapy for the treatment of alpha-asphotase,
00:27a rare genetic disease due to a genetic alteration that determines an enzymatic deficit and the missing enzyme is alkaline phosphatase,
00:42which is a fundamental enzyme for mineralization and bone growth.
00:47Alexion does not stop at the treatment, it tries to assist and support patients, patient associations and the scientific community throughout the course of the disease,
01:00from diagnosis to what is called beyond the pill, so services beyond the drug.
01:06For a few months now, Alexion has proposed to the scientific community a completely free service called HPP Easy Program,
01:19which is a service that provides a specialized, certified laboratory that performs tests to dose alkaline phosphatase,
01:34B6 vitamin substrates such as IPA and inorganic pyrophosphate.
01:43In addition to this project, which facilitates and speeds up a premature and tempestuous diagnosis of the pathology,
01:52Alexion supports a service called ARCO, which provides the drug at the patient's home,
02:02provides virtually nurses who guide the patient in the self-supply of the drug, but also guide and monitor the patient in the process of adherence to the treatment.
02:18In addition to this, psychological support, support from a nutritionist and possibly a physiotherapist is provided.
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