Morocco Grapples with 8,000 Rare Diseases Affecting 1.5 Million People

Hemophilia, cystic fibrosis, Charcot’s disease, brittle bone disease, Duchenne muscular dystrophy, progeria... more than 8,000 pathologies have already been identified, but the number continues to increase, with the discovery of new diseases. "It already starts with a long journey to obtain an accurate diagnosis. The latter is indeed quite difficult due to the large number of these rare diseases and their often disconcerting clinical presentation with frequent involvement of several organs. But no doctor can master this set of such different cases," explains Dr. Moussayer Khadija, president of the Alliance of Rare Diseases in Morocco (AMRM), to the newspaper Le Matin.

With this worrying picture, the doctor deplores the near-absence of patient care. Even worse, there are no reference and competence centers for these pathologies, as well as no systematic neonatal screening for all newborns. "The lack of universal medical coverage and the unavailability of certain drugs also complicate the obtaining of truly effective care."

According to Dr. Moussayer, in Morocco, the diagnosis is difficult to establish and it can take 2 to 10 years for it to be established and the treatments administered. "Furthermore, a large number of patients, never diagnosed, are treated only on the basis of the expression of their symptoms. This diagnostic wandering is notably due to the absence of a single medical record and a referring physician who centralizes the information and coordinates the care as is done in Europe."

Despite the difficulties mentioned, the president of the Alliance of Rare Diseases in Morocco (AMRM) indicated that hope is still allowed due to medical research that has evolved over the past thirty years. Currently, doctors have hundreds of effective treatments at their disposal. "Diagnostic tests, particularly in genetics and biology, as well as new complex and essential treatments exist. However, these means are limited and difficult to obtain in Morocco, as they are sometimes expensive and not always well known, even though their financial benefit is only measured in the long term."

However, it is necessary to go further and the Alliance of Rare Diseases in Morocco recommends that this issue become a public health priority in the country.