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
Lotgenoten gezocht
Wij zoeken lotgenoten die willen getuigen over hoe het is te leven met een zeldzame ziekte. Meer specifiek de volgende: syndroom van Kostman – ORPHA99749Sprengel anomalie – ORPHA3181slokdarmatresie myeloproliferatief neoplasma Mail …
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Symposium "Zorg voor zeldzame ziekten en de eerstelijn: de missing link?"
Op donderdag 19 november 2015 organiseert het Fonds Zeldzame Ziekten en Weesgeneesmiddelen het symposium Zorg voor zeldzame ziekten en de eerstelijn: de missing link?Hoe kunnen gezondheidswerkers in de eerste lijn …
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Symposium “Zorg voor zeldzame ziekten en de eerstelijn: de missing link?”
Op donderdag 19 november 2015 organiseert het Fonds Zeldzame Ziekten en Weesgeneesmiddelen het symposium Zorg voor zeldzame ziekten en de eerstelijn: de missing link?Hoe kunnen gezondheidswerkers in de eerste lijn …
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EURORDIS Membership meeting 2015 – Madrid
Ingrid Jageneau en Lut De Baere namen namens Radiorg deel aan de jaarlijkse ledendag van EURORDIS.Een belangrijk thema dit jaar was de opstart van Europese Referentienetwerken (ERN’s). Een eerste oproep …
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Debat “Geneesmiddelen, tegen elke prijs?”
Het debat “Geneesmiddelen, tegen elke prijs?” werd georganiseerd door de Onafhankelijke Ziekenfondsen. Ingrid Jageneau vertegenwoordigde Radiorg op dit debat (11 juni).Programma, presentaties en samenvatting zijn hier beschikbaar.
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Platform van Onderwijs aan Zieke Leerlingen in Vlaanderen – Poziliv
Op 29 april gaf Ingrid Jageneau een workshop op de 4de studiedag van Poziliv, het Platform van Onderwijs aan Zieke Leerlingen in Vlaanderen. Tijdens de workshop kwamen volgende topics aan …
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Internationale dag van klinische studies – 10 mei 2015
Op vrijdag 8 mei stond het pharma.be forum in het teken van het belang van klinische studies voor ons land. Wat zijn de uitdagingen en opportuniteiten voor België in de …
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Lotgenoten gezocht
Wij zoeken lotgenoten die willen getuigen over hun leven met een zeldzame ziekte. Specifiek zijn we op zoek naar mensen die een van volgende ziektes hebben: 1q21.1 deletiesyndroom – ORPHA250989myeloproliferatief neoplasma …
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Depakine en zwangerschap .. het Valproaat Syndroom
Valproaat wordt sinds 1960 gebruikt in de Europese Unie voor de behandeling van epilepsie, bipolaire stoornissen en, in sommige landen, ook van migraine. Natriumvalproaat is een molecule die voorkomt in Depakine …
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Radiorg vzw verwelkomt vier nieuwe leden: Kabuki, Langerhans-cel-histiocytose, slokdarmatresie, sclerodermie
Lees meer over deze vier vzw’s: Association Kabuki Belgium (syndroom van Kabuki) – websiteLCH Belgium (Langerhans-cel-histiocytose) – website Association Belge francophone de l’atrésie de l’oesophage (slokdarmatresie) – facebookAssociation des patients …
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Belgisch plan voor Zeldzame Ziekten: nieuwe publicatie (FAQ)
Er is een nieuwe publicatie van de Koning Boudewijnstichting: ‘Belgisch plan voor Zeldzame Ziekten – Vragen en antwoorden’. Dit document werd opgesteld op initiatief van het Fonds Zeldzame Ziekten en …
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Knappe video voor Zeldzame Ziektendag 2015
Zeldzame Ziektendag richt de aandacht dit jaar op de patiënt en zijn omgeving. Leven met een zeldzame ziekte doe je samen: dag na dag, hand in hand. Eurordis brengt in …