For this year’s Porphyria Awareness Week (PAW), running April 15-22, the American Porphyria Foundation (APF) is putting a spotlight on those individuals with a rare genetic disease that falls under the disorder’s umbrella. The goal is to increase awareness of porphyria among the public, as well as advocate…
At some point, it happens to anyone who opens up about a disability or ailment: Someone will spout a wonder cure. Ableist microaggressions are pervasive in a society of quick fixes and pain phobia. I see it everywhere: Minimize your pain with this new supplement or eliminate it altogether with…
In recognition of Rare Disease Day Feb. 29, Bionews Services launched a social media campaign last month asking patients to describe what makes them rare. Running Feb. 7–29, the #WhatMakesMeRare campaign was aimed at uplifting people with rare diseases by encouraging them to share their stories and perspectives. The…
Get regular updates to your inbox.