RARE Round-up - keeping you up-to-date

https://editions.rarerevolutionmagazine.com/html5/reader/production/default.aspx?pubname=&edid=cfec555e-0bf6-4813-9494-6b9538dbfd94&pnum=39 Behind every child living with TaySachs (or any one of thousands of other rare diseases) is an invisible scaffolding of care, built quietly by parents who become nurses, advocates and overnight experts through necessity. Patrícia Durão, co-founder of the Cure & Action for Tay-Sachs (CATS) Foundation and bereaved mum, explores what resilience really looks like when there is no “bouncing back”—from anticipatory grief and identity loss to the lifeline of community, siblings and truly practical self-care.