A Rare Opportunity: A Glimpse Into Life with Visual Impairment
“Look like you can see!” Dante Priebe implores to his panicked, visually impaired sister Sofia as she struggles behind the wheel to...
HIF Activities
Nicole Kear: When Losing Vision, Carpe Diem?
Nicole Kear faked it for a long time. On a romantic getaway, as her boyfriend gazed at the starlit sky, she...
Connecticut Rare Disease Day at the Capitol
Sixth-grader Daniela Delgado told Connecticut lawmakers on Rare Disease Day that she lives with rare disease just like 30 million other people...
Connecticut Rare Disease Day February 28
Members of Connecticut’s General Assembly (CGA) will hear from myriad people and organizations, including Sofia Sees Hope, about patient advocacy and access...
The Role of the Patient Voice in Rare Disease Advocacy
It’s you. It’s all about you. The journey from identifying a rare disease, to conducting studies, to approving a treatment,...
The Road to Treatment: Understanding How Therapies Are Developed
Successful clinical drug trials are a cornerstone of U.S. Food and Drug Administration approval, such as with LUXTURNA™, a ground-breaking genetic therapy that...
IRD Milestones: Reasons to Be Excited
1971 – Just those numbers in white on a black page appeared on the big screen. That’s how Brian Mansfield, PhD.,...
2018 LCA Family Conference Presentations
On October 5-6, 2018, Hope in Focus (formally Sofia Sees Hope) held its first Family Conference for LCA and IRD...
LCA Family Conference: The Role of the Patient Voice
Hope in Focus (formally Sofia Sees Hope) is holding its first LCA Family Conference on Saturday in Groton, CT. This event...
LCA Family Conference: The Road To Treatment
Hope in Focus (formally Sofia Sees Hope) is holding its first LCA Family Conference on Saturday in Groton, CT. This event...