RARE Round-up 1st May 2026 -

https://editions.rarerevolutionmagazine.com/html5/reader/production/default.aspx?pubname=&edid=cfec555e-0bf6-4813-9494-6b9538dbfd94&pnum=20 England’s latest NICE ruling on Brineura has created two classes of children with CLN2 Batten disease: those already on treatment, and those who will now be denied it. The Batten Disease Family Association’s CEO, Liz Brownnutt—who lost her niece and nephew to the condition—explains why the “split decision is a form of torture” and how systems are failing to keep step with progress.