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
Zeldzame ziekten opgenomen in V.N. verklaring over universele gezondheidsdekking
Op 23 september werd bij de Verenigde Naties door alle 193 lidstaten een verklaring aangenomen over universele gezondheidsdekking (Universal Health Coverage) waarin voor het eerst ook de zeldzame ziekten werden …
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Pia, het gezicht van de (valse?) hoop die gentherapieën met zich meebrengen
In België worden jaarlijks 12 kinderen geboren met de zeldzame en dodelijke spierziekte SMA type 1. Pia zette deze week een gezicht op dat cijfer en bracht het tot leven …
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Weekend van de AVHV Hemofilievereniging
De AVHV Hemofilievereniging nodigt u op 14 en 15 september 2019 van harte uit op hun “Weekendje Durbuy”.
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Delen en beschermen van onze gezondheidsgegevens, wat denken we daar als patiënt van?
Wat is de bereidheid van patiënten met een zeldzame ziekte om gezondheidsgegevens te delen? Welke noden en verwachtingen hebben patiënten ten aanzien van data-sharing en onderzoek?
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Aanklacht Testaankoop over prijs geneesmiddel Spinraza – reactie RaDiOrg
Test Aankoop dient samen met zijn Italiaanse zusterorganisatie Altroconsumo een klacht in bij hun respectievelijke mededingingsautoriteit voor de volgens hen exorbitant hoge prijs voor Spinraza.
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Dossier ‘Zeldzame ziekten, je staat er niet alleen voor’, bij Knack
Een interessant artikel over de inspanningen die gedaan worden om de zeldzame ziekten te bekampen. Illustratief voor de toenemende aandacht die deze groep ziekten geniet.
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Gentherapie, tussen hoop voor de patiënt en vrees voor druk op de uitgaven gezondheidszorg
In mei kreeg Novartis de bedenkelijke eer in de V.S. het duurste medicijn ter wereld op de markt te brengen, Zolgensma met een prijskaartje van 2.1 miljoen $ (1,87 miljoen …
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Edito juni 2019
Ze zijn achter de rug, de verkiezingen. Iedereen spreekt nu over onmogelijke formatierondes die ons te wachten staan. Vanuit RaDiOrg kijken we er reikhalzend naar uit wie minister van Volksgezondheid …
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Mijn DNA – een zaak van iedereen?
Mijn DNA – een zaak van iedereen?’, met deze prikkelende stelling ging de Koning Boudewijnstichting aan de slag in een burgerforum, op vraag van de minister van Volksgezondheid.
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Gezondheidszorg: welke verkiezingsbeloften kunnen ú verleiden?
Zeldzame ziekten, dat zijn er meer dan 6.000 verschillende die iedereen willekeurig kunnen treffen, ongeacht ras, leeftijd, stand of stemgedrag. Slechts voor 5 % van die zeldzame ziekten bestaat een …
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#ClinicalTrialsDay: België aan de top – samenwerking met PO’s essentieel
België behoort tot de drie best presterende landen in Europa voor het aantal vergunningen voor klinische studies. Maar het is moeilijk om voor deze trials deelnemers te vinden.
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Doorbraak bij Syndroom van Noonan
Onderzoekers verbonden aan de “Université de Montréal” en het “CHU Sainte-Justine Research Centre” melden dat het geneesmiddel “trametinib” eigenlijk voorzien bij kankerbehandelingen, hartschade kan terugdraaien bij patiënten met het Noonansyndroom, …
