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Update Belgisch plan voor Zeldzame Ziekten
We doen ons uiterste best jullie altijd de meest actuele informatie over het Belgische plan voor Zeldzame Ziekten te bezorgen, maar het blijft moeilijk om concrete info te krijgen. Volgens …
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Oostenrijk onderhandelt mee met België rond prijs geneesmiddelen
Oostenrijk sluit zich als vierde land aan bij de Benelux-samenwerking rond weesgeneesmiddelen. De vier landen zullen samen onderhandelen met farmaceutische bedrijven om de prijs van weesgeneesmiddelen binnen de perken te …
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Nieuw bestuur voor Radiorg
Zaterdag 11 juni vond de Algemene Vergadering van Radiorg plaats. Vijfentwintig ledenorganisaties waren effectief vertegenwoordigd: zij keurden unaniem de nieuwe strategische richting voor Radiorg goed.Er werden ook nieuwe bestuursleden verkozen. …
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Vijf Belgen verkozen als Europese patiëntvertegenwoordigers
EURORDIS wil dat patiëntenorganisaties deelnemen aan de ontwikkeling van de Europese referentienetwerken (ERN’s). Die moeten gespecialiseerde zorgaanbieders uit verschillende Europese lidstaten bij elkaar brengen om kennis en ervaring over zeldzame …
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Radiorg verwelkomt met plezier drie nieuwe leden
Als eerste het Franstalige Ensemble pour Lola et les enfants de la lune, een vzw voor kinderen die xeroderma pigmentosum hebben. Dat is een zeer zeldzame erfelijke huidziekte waarbij er …
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Fototentoonstelling te leen
Radiorg-voorzitster Ingrid Jageneau was begin februari een van de sprekers op de eerste joint meeting van de Belgian Society for Human Genetics (BeSHG) en de Nederlandse Vereniging voor Humane Genetica …
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Rare Barometer Voices: Laat je mening meetellen
Registreer je voor Rare Barometer Voices, #RareBarometer, een nieuw project van EURORDIS. Met dit initiatief streeft men ernaar patiënten met zeldzame ziektes in Europa nog meer een stem te geven. Wanneer …
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Rare Disease Day 2016
Voor het negende jaar op rij vierde de internationale gemeenschap Zeldzame Ziektendag, dit jaar op maandag 29 februari. Het thema was voor het vierde jaar op rij “Patient Voice”, of …
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24-25/2: EURORDIS-SYMPOSIUM (Brussel)
EURORDIS, de Europese organisatie voor zeldzame ziekten, brengt naar aanleiding van Rare Disease Day 2016 in Brussel alle stakeholders samen voor een groot symposium. Onderwerp van de tweedaagse is “Improving Patient Access …
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16 patiëntenorganisaties doen mee aan “De Warmste Week van Vlaanderen”
Deze week schiet Music For Life weer in gang, dat is de jaarlijkse benefietactie van de Vlaamse radiozender Studio Brussel. Tijdens de “Warmste Week van Vlaanderen” leven drie presentatoren een …
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Eerstelijnszorg is ontbrekende schakel: alle info over symposium 19/11
Het symposium over eerstelijnsgezondheidszorg als missing link in de zorg voor mensen met een zeldzame ziekte was een groot succes. Maar niet iedereen kon er vorige donderdag in Brussel bij …
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Symposium eerstelijnszorg
Donderdag 19 november 2015 vond het drukbezochte symposium plaats in Brussel over eerstelijnszorg als ontbrekende schakel in de zorg voor mensen met een zeldzame ziekte. Ook Radiorg was daar aanwezig, …
