1.5 million people suffer from rare diseases

Hemophilia, cystic fibrosis, Charcot’s disease, osteoporosis, Duchenne muscular dystrophy, premature aging … More than 8000 diseases have already been recognized, but the number continues to increase, with the discovery of new diseases. “It really begins with a long journey to get an accurate diagnosis. The latter, in fact, is very difficult due to the large number of these rare diseases and their often confusing clinical presentation with recurrent damage to several organs. But no clinician can control this group of The cases are completely different,” explains Dr. Masir Khadija, head of the Alliance for Rare Diseases in Morocco (AMRM) to Le Matin.

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With this disturbing picture, the doctor deplores the actual absence of patient care. Worse, there are no competent reference centers for these diseases as well as a systematic neonatal examination for all newborns. “The lack of universal medical coverage and the unavailability of some medications also complicate access to truly effective care.”

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According to Dr. Fate, the diagnosis is difficult to make in Morocco, and it is necessary for some to wait 2-10 years for it to be established and treatment given. Moreover, a large number of patients, who are never diagnosed, are treated solely on the basis of the expression of their symptoms. This diagnostic error is particularly due to the lack of a single medical file and a referring physician who centralizes information and coordinates care as in Europe.”

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Despite the mentioned difficulties, the president of the Alliance for Rare Diseases in Morocco (AMRM) indicated that there is still hope due to the medical research that has developed over the past 30 years. Currently, doctors have hundreds of effective treatments at their disposal. “Diagnostic tests, especially in genetic and biological matters, as well as complex and basic new treatments exist. However, these means are limited and difficult to obtain in Morocco, because they are sometimes expensive and not well known, while their benefits in financial terms are not It can only be measured over the long term.”

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However, we must go further, and the Alliance for Rare Diseases in Morocco recommends that this problem become a public health priority in the country.