Let’s Chat About … the importance of the patient voice in rare disease

Sofia Sees Hope is proud to bring our web series “Let’s Chat About …” to the Leber congenital amaurosis and rare inherited retinal disease communities. We’ve developed the series with those living with LCA and IRDs in mind, but we invite all members of our community, including those in research, industry, and the regulatory communities […]

Free

Let’s Chat About … CRISPR and gene editing technology

Sofia Sees Hope is proud to bring our web series “Let’s Chat About …” to the Leber congenital amaurosis and rare inherited retinal disease communities. We've developed the series with those living with LCA and IRDs in mind, but we invite all members of our community, including those in research, industry, and the regulatory communities […]

Free

Bidding in the Dark

Yes, we are asking you to tap your inner adventurer and philanthropist and bid on items that you might not have all the details around. We call it, Bidding in the Dark. For all of the items, we've provided some descriptions, so you're not completely in the dark. For some of the items, there are […]

Let’s Chat About … Gene Therapy for LCA

Join us as we chat with Michel Michaelides, (BSc MB BS MD(Res) FRCOphth FACS) a Founding Member of MeiraGTx and Professor of Ophthalmology, UCL Institute of Ophthalmology in Dept. of Genetics. He is a Consultant Ophthalmologist at Moorfields Eye Hospital in Depts. Of Inherited Eye Disease, Medical Retina and Paediatric Ophthalmology. MeiraGTX saw statistically significant […]

Free

A Toast to Treatments: Holiday Edition

  Ring in the holidays when you join us for a unique blend of holiday cheer, history and mixology, with James Beard Award Winner Mixologist Dale DeGroff, (aka King of Cocktails)! You'll enjoy a live zoom presentation by Dale that includes a demonstration, professional tips and tricks, and the stories behind these three holiday drinks:  Ritz […]

$50

Let’s Chat About … ProQR’s work in treatments for inherited retinal disease

Hope in Focus is proud to bring our web series “Let’s Chat About …” to the Leber congenital amaurosis and rare inherited retinal disease communities. We've developed the series with those living with LCA and IRDs in mind, but we invite all members of our community, including those in research, industry, and the regulatory communities […]

Free

Hope in Focus Rare Scavenger Hunt 2022

Are you ready for some fun? Back by popular demand for its third year, this event is a great way to have some fun while driving awareness for rare disease and raising funds for treatment for Leber congenital amaurosis, a rare form of retinal blindness.  Grab your family, friends, or co-workers and form a team […]

Let’s Chat About … Self-Advocacy and Supporting Your Child’s Education

Beth Borysewicz, State of CT Department of Aging and Disability Services; Bureau of Ed. Services for the Blind Let’s Chat About … Self-Advocacy in the Classroom Beth Borysewicz is the Vice Chair on the Hope in Focus Board of Directors, and is an Education Consultant for the Department of Aging and Disabilities, Bureau of Education […]

Let’s Chat About…Opus Genetics

Ben Yerxa, Co-Founder & President, Opus Genetics Let’s Chat About … Opus Genetics Ben Yerxa, PhD, is Co-Founder & President of Opus Genetics. Founded in 2021, Opus Genetics is a patient-first, science-driven gene therapy company tackling manufacturing obstacles standing in the way of treatments for ultra-rare blinding conditions. Dr. Yerxa will speak about the Opus […]

Paddle for Sight

Adventure Mystic 15 Holmes Street, Mystic, CT

Celebrate the last day of summer with a paddle on the Mystic River, benefiting Hope in Focus and research to treat blindness! On Wednesday, September 21, the last day of summer, join our paddle fundraiser sponsored by Adventure Mystic. Your fee includes a paddleboard or kayak, paddle, and life jacket. (Rain date, Thursday, September 22.) […]

$40
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