LCA Families Finding Strength with Each Other
Heather Le’s anxiety accompanying her daughter’s diagnosis of Leber congenital amaurosis melted into relief when she connected with a mom whose daughter was also born with LCA. And this mom – [...]
Diagnosis to Treatment: Pioneering LCA Patient Eases the Journey
As a global advocacy organization dedicated to helping those affected by blindness caused by rare inherited retinal disease, Sofia Sees Hope connects families with Leber congenital amaurosis [...]
The Patient Voice: A Critical Piece of the Rare Disease Advocacy Puzzle
Two people deeply involved in patient advocacy and public policy recently urged members of the rare disease community to use their personal experiences as a means of advocating for research and [...]
Rare Disease Advocacy: ‘Everything’s connected to everything’
Long before Grey’s Anatomy captured television audiences, the 1980s medical drama, Quincy, M.E., helped propel passage of Congressional legislation that fostered the development of more drugs for [...]
CT Rare Action Network Advocacy Workshop May 3
Learn more about rare disease patient advocacy and connect with the National Organization for Rare Disorders (NORD) about current legislative action on Friday, May 3, at the Connecticut Rare [...]
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 gazed at the vast darkness. Same with the twinkling lights at the tip of New York’s [...]
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 make a three-point turn in her driveway. “I do this horrible, [...]
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 in the United States – and just like them – she [...]
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 to treatment during a legislative [...]
Living with LCA: ‘Know It’s Not Something You’re Going to Conquer in One Day’
The best of both worlds – that’s how Ashlyn Lincoln describes life with her two sons: 4-year-old Gunner, who was born without vision, and 7-year-old Ace, who is sighted. “Both Ace and Gunner [...]