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Dag van de zeldzame ziekten in Marokko op 24 februari 2024 1183

Dag van de zeldzame ziekten in Marokko op 24 februari 2024 Zeldzame ziekten worden gedefinieerd als aandoeningen die minder dan één op de 2000 mensen treffen. Het grote aantal, meer dan 8000 reeds geïdentificeerde aandoeningen, betekent echter dat het totale aantal patiënten vaak groter is dan het aantal kankerpatiënten. Wereldwijd lijden meer dan 350 miljoen mensen aan deze aandoeningen. Dit betekent dat er een op de 20 mensen wordt getroffen. In marokko zijn er 3 miljoen patiënten die aan een van deze aandoeningen lijden. Deze ziekten zijn vaak chronisch, progressief en meestal ernstig. De manier waarop deze ziekten zich uiten is zeer divers: neuromusculair, metabolisch, infectieus, immuun, kankerachtig enz. De Dag van de Zeldzame Ziekten (Rare Diseases Day) wordt elk jaar gehouden op de laatste dag van februari. Het belangrijkste doel van deze dag is om het bewustzijn over zeldzame ziekten en hun impact op het leven van de getroffenen te vergroten. Bij deze gelegenheid organiseert de ALLIANTIE VAN ZELDZAME ZIEKTEN IN MAROKKO haar "Dag van de Zeldzame Ziekten", op 24 februari 2024 in Casablanca, in samenwerking met Sanofi-laboratoria en de Marokkaanse Vereniging voor Medische Biologie (AMBM). EEN ZEER BREED PANORAMA VAN ZELDZAME ZIEKTEN Extreem divers - neuromusculair, metabolisch, infectieus, immuun, kankerachtig, enz. - 80% van deze ziekten heeft een genetische oorsprong. Drie van de vier ziekten beginnen in de kindertijd, maar sommige wachten 30, 40 of 50 jaar voordat ze verschijnen. Ze voorkomen dat u: ziet (retinitis), ademt (cystische fibrose), weerstand biedt aan infecties (immuundeficiënties), het bloed normaal stolt (hemofilie), enz. Het therapeutische traject verloopt vaak chaotisch voor patiënten. Er is vaak moeite om de juiste diagnose te stellen, wat kan leiden tot dramatische vertragingen in de behandeling. En toch, hoewel er geen remedie is voor de meeste van deze aandoeningen, kan goede zorg het mogelijk maken om te leven met een zeldzame ziekte. PRIORITEITEN DIE IN MAROKKO MOETEN WORDEN UITGEVOERD Mensen met zeldzame ziekten lijden aan talloze problemen. Vooral op het gebied van diagnose en behandeling. Zij hebben ook te lijden onder een gebrek aan informatie en een gebrek aan verwijzingscentra. De Alliantie van Zeldzame Ziekten in Marokko (AMRM) richt zich op drie hoofddoelen: – snel de status van langdurige ziekte toekennen aan een groot aantal zeldzame ziekten, met name aan de duurste. Dit zou er voor zorgen dat zorg systematisch wordt gedekt en vergoed; – invoering van de status van "weesgeneesmiddel" voor geneesmiddelen die worden gebruikt bij zeldzame ziekten, met name door een snellere toegang tot de markt; – Introductie van routinematige screening van pasgeborenen op ernstige zeldzame genetische ziekten. Dr. MOUSSAYER KHADIJA ا Specialist in interne geneeskunde en geriatrie in een privépraktijk in Casablanca. Voorzitter van de Alliantie voor Zeldzame Ziekten Marokko (AMRM) DEBORRAH HAAGSTAM, vertegenwoordiger in Nederland van de Alliance Maladies Rares Maroc (AMRM) Dag van de zeldzame ziekten in Marokko op 24 februari 2024
Dr Moussayer khadija

Dr Moussayer khadija

Dr MOUSSAYER KHADIJA الدكتورة خديجة موسيار Spécialiste en médecine interne et en Gériatrie en libéral à Casablanca. Présidente de l’Alliance Maladies Rares Maroc (AMRM) et de l’association marocaine des maladies auto-immunes et systémiques (AMMAIS), Vice-présidente du Groupe de l’Auto-Immunité Marocain (GEAIM)


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Gematria 371

Gematria is a system of alphanumeric substitution in which each letter of the Hebrew alphabet is assigned a numerical value. This allows words and phrases to be translated into numbers, and those numbers can then be compared, analyzed, and interpreted to reveal hidden meanings, symbolic relationships, or mystical insights. Gematria is a central technique in Kabbalistic thought, where it serves as a tool for uncovering the deeper structure of sacred texts, especially the Hebrew Bible (Tanakh). The term "gematria" is believed to derive from the Greek word geometria, or possibly from a conflation of gramma (letter) and metron (measure), reflecting the art of measuring letters through numerical equivalence. Although most closely associated with Jewish mysticism, gematria has parallels in other traditions, such as Greek isopsephy and Arabic abjad numerology. In the Hebrew system, the 22 letters of the alphabet are assigned values, and with them, any Hebrew word can be reduced to a numerical sum. The word for "life" (chai, חַי), for example, is composed of Chet (8) and Yod (10), totaling 18. This is why the number 18 holds special significance in Jewish tradition. Gematria becomes especially powerful when words or phrases share the same numerical value. For example, the words Elohim (אֱלֹהִים) and HaTevah (הַטֶּבַע, "the nature") both sum to 86, suggesting a mystical identity between God and the natural world. Such equivalences are not considered accidental; rather, they are believed to reveal the hidden architecture of divine creation encoded in scripture. There are several forms of gematria: Standard Gematria: Using the basic letter-to-number values. Mispar Gadol: Adds the value of final forms (so-called "final letters") as their own distinct higher values. Atbash and Albam: Ciphers that replace letters based on alphabetic inversion or shifting, creating additional layers of interpretation. Ordinal Gematria: Assigns numerical values by sequence (Aleph = 1, Bet = 2, etc., up to Tav = 22). Kabbalists use gematria not merely for intellectual exercise but as a form of theurgical meditation. By contemplating the numerical relationships between divine names, commandments, and sacred texts, they seek to elevate their consciousness, reveal veiled meanings, and harmonize with the divine structure of the universe. In modern esotericism and Hermetic traditions, gematria has been adopted into systems of Western occultism, especially within Hermetic Kabbalah, the Golden Dawn, and Thelema. Practitioners often compare Hebrew, Greek, and English gematria to examine words and magical formulae, aiming to unlock multidimensional significance in magical texts and ritual language. Gematria is both a science of sacred number and a spiritual art. It unifies language and number, matter and spirit, exegesis and revelation. Through its perspective, letters cease to be mere symbols—they become vessels of divine energy, revealing a universe where nothing is random, waiting to be uncovered.

Back to School: Economic Burden for Families and Multiple Uncertainties 730

At the dawn of a new school year, an immutable reality haunts the many families concerned: the exorbitant cost of supplies and services related to education. They prepare to spend sometimes unreasonable amounts even before their children step through the school door, at all levels. The rising cost of back-to-school goes beyond just notebooks and textbooks: it extends to a set of essential or superfluous items that significantly increase the bill. There is a consensus around the financial burden of the school bag, a real headache. The average budget allocated per family for school supplies often exceeds 1500 dirhams. This figure rises even more when including uniforms, when required, transport costs, registration fees, and tuition for private schools. In some large cities, the total cost can exceed 3000 dirhams per child, a considerable economic weight for many families. But the problem is not only the high cost. The heaviness of the school bag, often cited, illustrates inflation not only financial but also material. Children’s backs and developing musculature are put under strain, raising many health concerns. Beyond the essentials—notebooks, pens, calculators, etc.—the supply lists frequently include superfluous items, often imposed by schools for unexplained reasons. These excessive demands weigh down the school bag and complicate students’ daily lives without real educational justification. In reality, we also face a system out of sync with parents' expectations and, by extension, the country’s. Some school content is outdated and problematic. Textbooks, another major expense, fail to evolve at the pace of the modernity that parents and children themselves aspire to. The modernization the country aims for is also undermined. Many families denounce persistent errors, mistakes, and content poorly adapted to modernity and their aspirations. Announced reforms, generally poorly conceived, have no impact and have always been ineffective. Criticism abounds both pedagogically and substantively: teaching materials struggle to engage students in stimulating and innovative learning. This is a major reason for the large dropout rates observed every year, and for a long time. Another recurring flaw is that, once again, the school start will be unequal: luxury for some, sacrifice for others. Officially, the school start often looks like an idyllic photo album where everything seems perfect. Yet, for the majority, it is far from a moment of excitement as it should be. Faced with an overly large educational budget, difficult choices must be made: pay rent or tuition, buy textbooks, or ensure family sustenance. These contradictions reflect a profound social divide. In short, Morocco at two speeds, denounced by His Majesty the King in the 26th Throne Speech. For many parents, school remains a theoretical right, sometimes without interest, especially in rural areas. In reality, it begins with debt that weighs heavily on daily life and sometimes jeopardizes the children's very future. This paradox, far from resolving, repeats every year, without significant measures from public authorities to lighten the burden, except for measures such as distributing school bags with a short lifespan and very meager financial aid. The quality of teachers has also increasingly raised concern for several years, especially since the so-called contract-based recruitment among unemployed degree holders was "invented," often struggling to find stable employment elsewhere. This situation has led to a qualitative decline in teaching, where many teachers are more occupied with union and social claims than with their primary mission: to instruct and transmit knowledge. The number of strike days is staggering. This contractual dynamic, far from improving the educational system, sometimes fosters instability and demotivation. Moreover, it is regrettable to note increased politicization among some teaching circles, with ideologies infiltrating beyond the pedagogical framework. These trends, often aimed at the systematic contestation of the established order, harm a serene school climate and compromise the necessary neutrality of any teaching. Children bear the cost. Thus, more than a simple issue of training or skills, the challenge posed by the quality of teachers in Morocco highlights the need for a global and courageous reform, combining improved recruitment conditions, serious academic and ongoing training, and a clear separation between politics and education. Without this, Moroccan schools risk losing even more effectiveness and credibility, to the detriment of students and the country's future. Education should not rely on the financial endurance, patience, or indifference of families, but on a coherent educational and social policy. A policy based on a clear projection of what the Moroccan citizen should be at a precise horizon. It is essential that the State and sector actors collaborate to limit costs imposed on families: reviewing supply lists to eliminate the superfluous, improving the quality and relevance of textbooks, further developing support for low-income families, deducting school-related expenses from taxes, without evading the issue of content and teacher competencies. The "price" of this school start is measured not only in dirhams but in the social divide it deepens, in the inequalities it maintains. The real obstacle to education lies in teacher competence, in curricula, and at the bookstore checkout where families must pay for their children to have even a chance to succeed. The school start is a serious matter requiring collective awareness and concrete actions to ensure that every child, regardless of family income, can access a dignified education. The time is for reform in practice, not just in speeches and postures. School is the only tool to reduce differences, guarantee social ascension, and ensure a bright future for the entire country, at a single speed.