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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, …
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Wat zijn de noden om tot snelle diagnoses te komen bij zeldzame ziekten?
Om artsen in België op een effectieve manier tot snellere diagnoses van zeldzame ziekten te komen, moet de opleiding geneeskunde inzake zeldzame ziekten aangepast worden. De opleidingsmethodiek moet meer de …
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Waar ligt de Vlaming wakker van?
Nieuwjaarswensen liggen ver achter ons. Resultaten van een enquête van de VRT nieuwsdienst haakten zopas evenwel direct in op de nieuwjaarswens die bij velen van ons met stip op de …
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Undiagnosed Children’s Day – 26 april
26 april, dag van de niet-gediagnosticeerde ziekten. Want ondanks de gigantische sprongen in genomics hebben veel ouders nog steeds het raden naar de exacte oorzaak van de aandoening van hun …
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Diagnose : in 48 uur een diagnose van een genetische aandoening
25/04/2019 Internationale dag van het DNA. Vandaag wordt het Icon – GAP project voorgesteld, een samenwerking tussen o.a. imec, UZ Leuven, KU Leuven, UGent. In 48 uur en tegen aanvaardbare …
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Prof. Julie De Backer, UZ Gent, krijgt Baillet Latour Beurs 2019 voor Medisch Onderzoek
Prof. Julie De Backer, cardiologe en klinisch genetica aan de UZ Gent, is voor heel wat van onze leden met cardio-vasculaire aandoeningen een bekende naam, in het bijzonder voor mensen …
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Rare Disease Day 2019
Op 28 februari kon je op heel wat plaatsen vrijwilligers van RaDiOrg tegenkomen. De grootste eye-catchers waren de kleurrijke vrijwilligers die doorheen de dag in drie grote treinstations opdoken, maar …
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De Edelweiss Award 2019 gaat naar Nadine Albergs, ‘gouden vrijwilliger’ bij Spierziekten Vlaanderen vzw
RaDiOrg is verheugd de Edelweiss Award dit jaar te hebben mogen uitreiken aan een ‘gouden vrijwilliger’. Velen onder ons zullen in het verhaal van Nadine Albergs iemand herkennen die in …
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Lut De Baere benoemd tot erevoorzitter RaDiOrg!
Wij zijn vereerd dat Lut De Baere de titel van erevoorzitter van RaDiOrg heeft willen aanvaarden. Lut heeft hopen kennis en ervaring en een netwerk om ‘u’ tegen te zeggen.
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EURORDIS Photo Award: stem mee!
Honderden foto’s uit meer dan 40 landen werden ingestuurd. Doel van de foto? Het leven met een zeldzame ziekte in beeld brengen. De shortlist van 5 foto’s werd geselecteerd door National Geograhic …
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Felicitaties voor de ALS-liga
De Belgische ALS-liga zal op 12 februari de “EURORDIS members” onderscheiding, ontvangen tijdens de Black Pearl Awards Night, een jaarlijks evenement van EURORDIS waarop bijzondere verdiensten voor zeldzame ziekten worden …
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Win €1000 met jouw activiteit naar aanleiding van Rare Disease Day
Voor het 4e opeenvolgende jaar zal RaDiOrg drie ledenorganisaties steunen die een activiteit organiseren in het kader van de internationale Rare Disease Day en dit met een cheque van €1000.
