About A.I.L.U. – Associazione Italiana Leucodistrofie Unite e Malattie Rare
The Italian Association Ailu leukodystrophies United and rare diseases was founded in 1988 by the will of two parents with children suffering from ALD ( one of whom died: Giovanni Di Nucci ) , some leucodistrofici patients, doctors and people of “good will.”
It has the following goals:
Gather Gather people with ALD (adrenoleukodystrophy), AMN (Adrenomyeloneuropathy) and all other leukodystrophies, their relatives, parents, spouses and those who take care of their problems in order to provide people with leukodystrophies and pathological forms similar and their families about the disease and assist them. Implement moments of meeting delighted to share experiences and information related to rare diseases.
Establish a network of communication between the families and coordinate them also to establish a statistical and frequency of leucodistrofiche diseases. In addition, to facilitate communication and the exchange of scientific information, creating interaction with the industry, the sick and their families.
Encouraging progress in the knowledge of leucodistrofiche diseases and the use of means to alleviate the effects on the individual, social, psychological, both the sick and families, who take charge of the suffering of their relatives. More generally, promote scientific and medical research on rare diseases.
Increase public awareness about leukodystrophies, rare diseases and genetic diseases: in particular, the dissemination of knowledge of these diseases, through the organization of conferences, meetings, public debates, events in general, including also cultural and / or events convivial and publications. Raising even the press and institutions to emerge the problems and common needs of people who are suffering from rare diseases in general.
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