Dag van de zeldzame ziekten in Marokko op 24 februari 2024 1557

Dr Moussayer khadija, 2 y.

- Society - Health -

1.6 min read.

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

THE MEDITATIONS - Book I.[1/3] 3878

Bluwr X Commons: Marcus Aurelius, 2 y.

3.7 min read.

1. I learned from my grandfather, Verus, to use good manners, and to put restraint on anger. 2. In the famous memory of my father I had a pattern of modesty and manliness. 3. Of my mother I learned to be pious and generous; to keep myself not only from evil deeds, but even from evil thoughts; and to live with a simplicity which is far from customary among the rich. 4. I owe it to my great-grandfather that I did not attend public lectures and discussions, but had good and able teachers at home; and I owe him also the knowledge that for things of this nature a man should count no expense too great. 5. My tutor taught me not to favour either green or blue at the chariot races, nor, in the contests of gladiators, to be a supporter either of light or heavy armed. He taught me also to endure labour; not to need many things; to serve myself without troubling others; not to intermeddle in the affairs of others, and not easily to listen to slanders against them. 6. Of Diognetus I had the lesson not to busy myself about vain things; not to credit the great professions of such as pretend to work wonders, or of sorcerers about their charms, and their expelling of Demons and the like; not to keep quails (for fighting or divination), nor to run after such things; to suffer freedom of speech in others, and to apply myself heartily to philosophy. Him also I must thank for my hearing first Bacchius, then Tandasis and Marcianus; that I wrote dialogues in my youth, and took a liking to the philosopher’s pallet and skins, and to the other things which, by the Grecian discipline, belong to that profession. 7. To Rusticus I owe my first apprehensions that my nature needed reform and cure; and that I did not fall into the ambition of the common Sophists, either by composing speculative writings or by declaiming harangues of exhortation in public; further, that I never strove to be admired by ostentation of great patience in an ascetic life, or by display of activity and application; that I gave over the study of rhetoric, poetry, and the graces of language; and that I did not pace my house in my senatorial robes, or practise any similar affectation. I observed also the simplicity of style in his letters, particularly in that which he wrote to my mother from Sinuessa. I learned from him to be easily appeased, and to be readily reconciled with those who had displeased me or given cause of offence, so soon as they inclined to make their peace; to read with care; not to rest satisfied with a slight and superficial knowledge; nor quickly to assent to great talkers. I have him to thank that I met with the discourses of Epictetus, which he furnished me from his own library. 8. From Apollonius I learned true liberty, and tenacity of purpose; to regard nothing else, even in the smallest degree, but reason always; and always to remain unaltered in the agonies of pain, in the losses of children, or in long diseases. He afforded me a living example of how the same man can, upon occasion, be most yielding and most inflexible. He was patient in exposition; and, as might well be seen, esteemed his fine skill and ability in teaching others the principles of philosophy as the least of his endowments. It was from him that I learned how to receive from friends what are thought favours without seeming humbled by the giver or insensible to the gift. 9. Sextus was my pattern of a benign temper, and his family the model of a household governed by true paternal affection, and a steadfast purpose of living according to nature. Here I could learn to be grave without affectation, to observe sagaciously the several dispositions and inclinations of my friends, to tolerate the ignorant and those who follow current opinions without examination. His conversation showed how a man may accommodate himself to all men and to all companies; for though companionship with him was sweeter and more pleasing than any sort of flattery, yet he was at the same time highly respected and reverenced. No man was ever more happy than he in comprehending, finding out, and arranging in exact order the great maxims necessary for the conduct of life. His example taught me to suppress even the least appearance of anger or any other passion; but still, with all this perfect tranquillity, to possess the tenderest and most affectionate heart; to be apt to approve others yet without noise; to have much learning and little ostentation. 10. I learned from Alexander the Grammarian to avoid censuring others, to refrain from flouting them for a barbarism, solecism, or any false pronunciation. Rather was I dexterously to pronounce the words rightly in my answer, confining approval or objection to the matter itself, and avoiding discussion of the expression, or to use some other form of courteous suggestion. 11. Fronto made me sensible how much of envy, deceit and hypocrisy surrounds princes; and that generally those whom we account nobly born have somehow less natural affection. 12. I learned from Alexander the Platonist not often nor without great necessity to say, or write to any man in a letter, that I am not at leisure; nor thus, under pretext of urgent affairs, to make a practice of excusing myself from the duties which, according to our various ties, we owe to those with whom we live. 13. Of Catulus I learned not to condemn any friend’s expostulation even though it were unjust, but to try to recall him to his former disposition; to stint no praise in speaking of my masters, as is recounted of Domitius and Athenodorus; and to love my children with true affection. 14. Of Severus, my brother, I learned to love my kinsmen, to love truth, to love justice. Through him I came to know Thrasea, Helvidius, Cato, Dion, and Brutus. He gave me my first conception of a Commonwealth founded upon equitable laws and administered with equality of right; and of a Monarchy whose chief concern is the freedom of its subjects. Of him I learned likewise a constant and harmonious devotion to Philosophy; to be ready to do good, to be generous with all my heart. He taught me to be of good hope and trustful of the affection of my friends. I observed in him candour in declaring what he condemned in the conduct of others; and so frank and open was his behaviour, that his friends might easily see without the trouble of conjecture what he liked or disliked.