"The persistence of the pandemic has not made us forget and must not make us forget those who suffer from other diseases and it is for this reason that today's anniversary takes on an even more important and profound meaning".
This was declared by the Regional Health Councilor Mario Nieddu on the occasion of the celebrations for the World Day of Rare Diseases: "The world day must first of all be an opportunity to raise awareness and inform anyone on this very delicate issue, recalling the importance of treatments and research. In our country, the Consolidated Law on rare diseases was approved at the end of 2021, but it has not yet been fully applied ".
"In Sardinia - says the representative of the Giunta Solinas - about 10,500 people with a rare disease are assisted in the specialized centers of our hospitals, of these 1,200 are less than fourteen years old. In our area some pathologies are frequent, in particular anemias hereditary, keratoconus, autoimmune polyendocrinopathies, muscular dystrophies and hereditary coagulation disorders ".
"The Region - underlines the commissioner - is engaged in the field of rare diseases with a network coordinated by the Regional Reference Center of the Microcitemico Hospital of Cagliari and which is spread throughout the territory through the Reference Centers for pathology identified in the departments of hospitals all over the island. We have also allocated resources to support the costs of medical facilities which, although not falling within the LEA, are indispensable for the quality of life of those suffering from certain pathologies. Let's talk about support for the purchase of creams. , gels, eye solutions and food supplements to support drug therapies, aids that otherwise would be entirely the responsibility of the patients ".
"There is still work to be done - he concludes - starting with the strengthening of the tools already in place. In recent years, despite Covid, dialogue and collaboration with associations has never been lacking, also through the regional coordination and the technical committee science, to which we will very soon give a new fundamental impulse to face the challenges that await us ".
