Well Mb05 Awm Aps2 Barrel

Patients rare: "We have the right to treatment"

On 28 February the International Day of rare diseases . In Milan conference on those lung: new therapies on the way, thanks to the associations of patients

LONDON - idiopathic pulmonary fibrosis, primary pulmonary hypertension, sarcoidosis, lymphangioleiomyomatosis (LAM), scleroderma, idiopathic chronic eosinophilic pneumonia (ICEP), pulmonary alveolar proteinosis (PAP). They are some of the 130 considered rare lung diseases because they affect less than one person every two thousand. As with all rare diseases, no one knows precisely how many people hit: The available data are not precise and are often underestimated, but given that this is a set € of various ailments and it is likely that millions of people are affected. According to latest estimates, however, are almost two million Italians have to fight against a disease uncommon (it is estimated that worldwide there are more than seven thousand different rare diseases) and they dedicated the World Day which is celebrated on February 28.

"rare but equal" - With the slogan "Rare But Equal" Day 2011 wants to draw attention to inequalities in health that exist between people with rare diseases in different countries and the rest of society. This year's campaign aims to support equitable access for this particular category of patients, health care and social services, medications and treatments orphans. Be affected by a disease is unusual and infrequent, in fact, unfortunately, involves additional difficulties. In the diagnosis, a rare find because it is very difficult, since Because doctors do not always see a few now recognize the clinical picture. A therapeutic level, because very often patients do not know where to go and find it difficult to reach all appropriate reference. At the regulatory level, because they do not always and not all rare diseases have the recognition of the desirable event (free tickets, assistance with medication off-label). In terms of research, because pharmaceutical companies traditionally have not invested large capital in research on rare diseases. And finally, in terms of emotional experience, because the sick live feelings of disorientation and marginalization more radical, often feeling alone, abandoned and less fortunate than others.
CONTINUA su Corriere.it

RDD 2011 , Giornata Mondiale delle malattie rare
Uniamo , federazione italiana malattie rare
Centro Nazionale Malattie Rare  dell'Istituto Superiore di Sanità
Malati Rari
Ma.Re.Po. , malattie rare polmonari
Orpha.net , malattie rare e orfane
Eurordis , Rare diseases Europe