Connecticut Legislature Establishes Permanent Rare Disease Advisory Council
Connecticut Gov. Ned Lamont signed into law years-in-the-making legislation establishing a permanent Rare Disease Advisory Council (RDAC), effective July 1, 2022....
HIF Activities
Rare Disease Day 2022: Hope in Focus Promotes Rare Disease Advisory Council
Rare Disease Day 2022 kicked off today as people gathered across the country, including us here at Hope in Focus,...
Our New Name – FAQs
Why did we change our name? It’s simple: we’ve grown and matured as an organization. And we’re looking ahead to...
Sofia Sees Hope Rebrands with an Eye to the Future
Sofia Sees Hope this month unveiled a new name and logo — Hope in Focus — as the organization sets...
Sofia Sees Hope Scavenger Hunt
Welcome to the Sofia Sees Hope Scavenger Hunt! We are glad to meet you. We are doing this to continue...
Raising Awareness by Sharing Rare Disease Stories
Had he received a more definitive rare disease diagnosis in 2003, Alan Gunzburg said he might not have lost so...
Making Connections in the LCA Community Provides a Path Forward
Danielle Senick of Norwich, Conn., reached out to Hope in Focus (formally Sofia Sees Hope) more than three years ago when she...
Living with LCA: Finding Her ‘Light’ In the Kitchen
A recipe for addiction recovery transformed Orly Shamir’s life, and now it’s about to change her future. Orly, who’s name...
Rare Disease Day 2020: Lawmakers Hear From Advocates
Rare disease patients, caregivers, advocates, researchers, doctors, healthcare providers and lawmakers gathered at Connecticut’s capitol in Hartford on Friday, Feb....
Connecticut Rare Disease Day 2020
The end of February signals the time to focus awareness on rare conditions by celebrating Rare Disease Day, a global event...