Many people have never heard of acromegaly, and even fewer understand what it’s really like to live with it. We asked people living with acromegaly what they wish others knew about the condition. Here’s what they shared ⬇️
Awareness is key, agromegaly touches many - we just don’t know until we talk with them
Organizations that understand patient advocacy as organizational culture rather than PR positioning create entirely different outcomes. Might also be worth considering, the gap between what healthcare companies say they value and how patients actually experience care is where credibility lives or dies.
RDDT: a remote ML/AI B2B lost rare disease patient analytics provider to HCOs with a focus on early diagnosis for treatable rare diseases within community/rural healthcare, compliantly sponsored by manufacturers
2wI bet the >80% (130k US) of acromegaly patients who are undiagnosed and lost in healthcare, would want a diagnosis, particularly since there are now FDA approved therapies! I know a way for Crinetics to help make that happen, see finding-rare.com