zorgouderschap Archives

Wat je niet ziet

emma, persoonlijk Posted by Kelly Steenlandt

“We are phelan lucky”. Het was onze slogan vrijdag op St. Patrick’s Day. Een dag om awareness te creëren rond het Phelan-McDermid syndroom en om geld in te zamelen voor onderzoek.Dat laatste gebeurt door het verkopen van kleding (hoofdzakelijk t-shirts en sweaters) met het logo van het Phelan-McDermid Syndrome Foundation. Elk jaar heeft de kledij…

Zeldzame ziektendag 2023

emma Posted by Kelly Steenlandt

“Maar ze ziet er zo gelukkig uit.” Het is een zin die ik al vaak mocht aanhoren. Wellicht bevat ze ook een waarheid want anders zouden haar uitingen toch van een andere orde zijn. Al zijn die momenten er ook: het zijn diegenen die niet op beeld staan en waar we weinig over delen. Nog…

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