Rare Disease Day Archives

Posted February 28, 2018

‘We know how important it is to know your gene. We’ve lived it.’

It took more than seven years to get a genetic diagnosis for our daughter. During that time, doctors were pretty sure she had LCA, although we also heard that maybe […]

CT Rare Disease Day: Patients Must Be Advocates

On Rare Disease Day – Wednesday, February 28 – doctors, researchers, advocates, patients, caregivers, industry representatives and legislators will come together in Connecticut and around the [...]

2018 Rare Disease Day at Quinnipiac University

Rare Disease Day is a global event when we raise awareness of some of the 7,000 different rare diseases. Although each disease on its own is rare, amazingly 1 in […]