4,008 followers
RT @pulseinfoframe: Setting up a national #raredisease registry requires a lot of work. This study investigates via focus groups what that…
RT @pulseinfoframe: Setting up a national #raredisease registry requires a lot of work. This study investigates via focus groups what that…
Setting up a national #raredisease registry requires a lot of work. This study investigates via focus groups what that could mean for Slovenia, where an estimated 150,000/2 million live with a rare disease. https://t.co/ZyPrWkF4Ha