Cellular metabolism disorders, immunodeficiency, scleroderma… Rare diseases are gaining ground in Algeria. The first reason, according to specialists: consanguineous marriages
Speaking on national radio, Mouloud Moutchou, president of the El Moustakbel association for the fight against rare diseases
and autism, revealed that his organization has identified more than 270 rare diseases throughout the national territory. The most affected wilayas are Tizi-Ouzou, Bejaïa, Ghardaïa and Jijel.
The president of the association specifies that studies have shown that more than 35% of these pathologies have their origin in consanguineous marriages. The latter generate, in fact, genomic islands that are transmitted at birth.
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For better management of rare diseases
Mr. Moutchou also welcomed the latest decisions of the Head of State concerning the management of rare diseases and immunodeficiency in newborns. Especially since the food supplements necessary for these patients, which are difficult to find on the market, are increasingly expensive.
The president of the association El Moustakbel believes that Algeria must give more consideration to this specific category. He points out that several wilayas have neither laboratories for the early diagnosis of rare diseases, nor a psychological care centre. And invites the authorities to coordinate with the associations working in the field.
Regarding the way to fight against this scourge, Mouloud Moutchou recommends the development of a national plan for the management of rare diseases which includes the opening of analysis centers for early diagnosis and the assurance of availability of food supplements with subsidized prices.
In the last instance, let us recall that a survey by the Foundation for Medical Research (Forem, 2007), carried out in 2018, revealed that 38.30% of marriages in Algeria are consanguineous.
An orphan disease is a pathology that does not benefit from effective treatment. Most orphan diseases are rare diseases, the development and marketing of drugs for which are not profitable for the pharmaceutical industries.