Showing results by author "Pam Squires & Sarah Jones" in All Categories

Welcome to Rare Candor, a podcast for people who live with and love someone with a rare disease. We'll talk about medications, accessing care, navigating everyday lift, policy and insurance issues, and more. Living with a rare disease can be an exhausting, annihilating, scary, lonely, unpredictable and invisible - for the people with their disease and those that love them. We promise not to make you depressed, peppered in humor is guaranteed, albeit likely dark humor - but we trust you will appreciate the rare candor.

Welcome to Rare Candor, a podcast for people who live with and love someone with a rare disease. We'll talk about medications, accessing care, navigating everyday lift, policy and insurance issues, and more. Living with a rare disease can be an exhausting, annihilating, scary, lonely, unpredictable and invisible - for the people with their disease and those that love them. We promise not to make you depressed, peppered in humor is guaranteed, albeit likely dark humor - but we trust you will appreciate the rare candor.