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Wie zijn “de zwakkeren” in tijden van COVID-19?!
Katleen Polfliet, met sclerodermie, aan het woord over de alomtegenwoordige stempel de “zwakkeren” in de maatschappij…: Het zit al een tijdje in mijn hoofd en lijf ‘te borrelen’… In vele …
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Hoever staan we met het Belgisch Plan Zeldzame Ziekten?
Een nieuwe minister van Volksgezondheid creëert weer nieuwe verwachtingen. RaDiOrg ging de voorbije maanden met diverse politieke partijen, waaronder ook sp.a, in gesprek over onze beleidsvoorstellen. Maar wat is er …
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Kenmerken van zeldzame ziekten vanuit economisch perspectief
In de video “The World of Rare Disease” komen de pijnpunten aan bod waar meer dan 500.000 patiënten in België tegen aanlopen: de definitie van een zeldzame ziekte, het parcours …
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De koude douche van de Warmste Week 2020
De Warmste Week kondigde onverwacht een ommezwaai aan. Geen mogelijkheid tot fondsenwerving meer in 2020. Waarderen de organisatoren dan zelf niet hoe ze ons hebben leren géven, aandacht én geld. …
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De uitdagingen om baanbrekende therapieën toegankelijk te maken én te houden: wat leren we van ‘symbooldossier’ Zolgensma en de herevaluatie van Spinraza voor mensen met SMA?
De prijs van een innovatieve therapie is niet de enige uitdaging om ze toegankelijk te maken voor de patiënten die ze nodig hebben.
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Wie werden de laureaten van de Edelweiss Awards 2020?
RaDiOrg reikt jaarlijks Edelweiss Awards uit om mensen met een bijzondere verdienste voor de zeldzame ziekten in de bloemetjes te zetten. Dit jaar werden ze voor het eerst in drie …
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Fotogalerij Edelweiss Awards Uitreiking 2020
Herbeleef de uitreiking van de Edelweiss Awards 2020 in deze uitgebreide fotoreportage.
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De beleidsvoorstellen van RaDiOrg in de pers
RaDiOrg maakte op 13 februari 7 beleidsvoorstellen voor zeldzame ziekten bekend. Dat is niet onopgemerkt voorbijgegaan. Een bloemlezing.
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#SamenZeldzaam, hoezo?
Heb je een kind dat wellicht voor het volwassen is rolstoelgebonden zal zijn? Zal je ziekte je in de fleur van je leven plots één na één al je functies …
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Zeven voorstellen voor een meer doeltreffend en patiëntgericht beleid voor zeldzame ziekten
Met zeven concrete voorstellen wil Radiorg de beleidsverantwoordelijken inspireren tot het nemen van doeltreffende en haalbare maatregelen.
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De genomineerden voor de Edelweiss Awards 2020
In de categorie Opmerkelijke patiënt / ‘patient advocate’ Amélie Bogaert (epidermolysis bullosa)Gillian en Annemie Pasmans (Reuzenaxonale neuropathie (GAN))Ingrid Jageneau (zeldzame ziekten, algemeen)Linda Van de Sande (WAGR syndroom)Mieke Van Wezer (deletie 22q11)Peter …
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Waarom we wachten op de erkenning van expertisecentra voor zeldzame ziekten
Patiënten met een zeldzame ziekte worden heel vaak expert in hun ziekte. En dat is nodig, want de artsen die ze consulteren zijn er meestal niet mee vertrouwd. En omdat …
