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VRT 1 reeks ‘reset’
VRT zendt sinds enige tijd verhalen uit van mensen die na een levensveranderende medische diagnose de resetknop indrukken en hun leven opnieuw beginnen. Enkele van deze ‘reset’-verhalen gingen over zeldzame …
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Nieuwe databank voor klinische proeven in België
Het FAGG lanceert een online databank met informatie over alle klinische proeven in België die zijn goedgekeurd door het agentschap. Dankzij deze databank zullen zowel gezondheidszorgbeoefenaars als patiënten de rekruteringscriteria …
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Europlan 2018: tweede rondetafelgesprek
In het kader van de tweede European Joint Action on Rare Diseases, RD-ACTION vindt op 8 juni een tweede en laatste Europlan rondetafelgesprek plaatst. Dit gebeurt in samenwerking met Eurordis.
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RaDiOrg stelt met trots de laureaat 2018 van de Edelweiss Award voor
Patiëntenorganisatie ABSM, die zich inzet voor patiënten met het Syndroom van Marfan, nomineerde Romain Alderweireldt voor de Edelweiss Award omwille van zijn innovatieve ideeën en zijn doorzettingsvermogen. Na de diagnose …
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Rare Disease Day 2018
In 2018 organiseerde Radiorg infostands in de 7 universitaire ziekenhuizen die erkend werden binnen de Functie Zeldzame Ziekten
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Officiële video Zeldzame Ziektendag 2018
Zeldzame Ziektendag 2018 komt dichterbij. Bekijk hieronder de officiële video en deel gerust op social media! #showyourrare.
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Rare Disease Day 2017
Het thema van de Rate Disease Day was dit jaar: ‘Research brings hope to people living with a rare disease’ of ‘Onderzoek brengt hoop bij de mensen die leven met …
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Zeldzame ziekten stoppen niet aan de grenzen
EMRaDi – Euregio Meuse-Rhine Rare Diseases Het domein van de zeldzame ziekten is een context waar een Europese samenwerking een grote meerwaarde betekent. Het EMRaDi-project is een drie jaar durend …
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Resultaten Rare Barometer Voices survey
Eurordis gaf de resultaten vrij van de eerste Rare Barometer Voices enquête over de impact van een zeldzame ziekte op het dagelijks leven van de patiënten en hun familie.
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20 patiëntenorganisaties doen mee aan “De Warmste Week van StuBru”
“De Warmste Week” is terug ! Deze benefietactie van radiozender Studio Brussel loopt nog tot 24 december. Linde Merckpoel, Eva De Roo en nieuwkomer Bram Willems maken een week lang …
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RaDiOrg verwelkomt VASCAPA
Meer dan 10% van de bevolking wordt geboren met een afwijking aan het vaatstelsel. De meeste gevallen zijn eerder onschuldig, maar sommige zeldzame vormen hebben een zware impact op de …
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1 tot 7 december: week van de infantiele spasmen
In de Verenigde Staten is 1 tot 7 december de week van de infantiele spasmen! België en Europa moeten hoognodig méé op de kar van die “awareness week” springen. be-TSC, belangenvereniging …
