LCA Family Conference: IRD Milestones
Hope in Focus (formally Sofia Sees Hope) is holding its first LCA Family Conference on Saturday in Groton, CT. This event...
HIF Activities
Dinner in the Dark 2018 Live Auction
Dinner in the Dark‘s live auction is like no other! With charming master auctioneer Mike O’Farrell to guide you, our...
Parent Support On Line 1
In the sometimes-isolating world of rare inherited retinal diseases (IRDs) such as Leber congenital amaurosis (LCA), another option exists to...
On Rare Disease Day, Shining A Light
Lisa Kurec never heard of the National Organization for Rare Disorders (NORD) until Wednesday, but after many years of finding no answers for...
‘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...
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...
Successful Strategies for Patient Organizations
Your voice counts! Lawmakers on the state level need to hear from people living with Leber congenital amaurosis (LCA) and other rare...
2017 Rare Disease & Orphan Products Breakthrough Summit
A two-day conference in Washington, D.C., earlier this month offered the opportunity for organizations such as Hope in Focus (formally...
Continuing to See Hope for IRD Treatments
At three o’clock Thursday afternoon, Beth Chiarella and I had a very public moment of tears and hugs at Baltimore–Washington...
Presenting at FDA Hearing Thursday on RPE65 Genetic Therapy Drug
Hope in Focus (formally Sofia Sees Hope) Co-Founder Laura Manfre will help provide the LCA community’s perspective to a Food...