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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. Lees meer…
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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
Memorandum aan de federale en regionale beleidsverantwoordelijken – samenvatting België telt zo’n 500.000 patiënten met een zeldzame ziekte. RaDiOrg, de Belgische koepelvereniging voor mensen met een zeldzame ziekte, ijvert voor …
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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 …
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Onderzoek naar patiëntenparticipatie bij medisch consult – VUB
Katlijn Sanctorum, bestuurslid bij RaDiOrg, voert een doctoraatsonderzoek naar de manier waarop mensen de consultatie bij hun arts-specialist beleven. Zij zoekt hiervoor deelnemers. Het onderzoek richt zich specifiek tot personen …
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RaDiOrg in actie!
Radiorg nam actief deel aan de vergaderingen bij het Fonds Zeldzame Ziekten en het Vlaams Netwerk Zeldzame Ziekten
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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 …