Entries by Chelsea's Hope

Announcing Lafora Therapy Town Hall

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  Questions about what therapies are next for the Lafora community? We are hosting a Lafora Therapy Town Hall to discuss what treatments the community can rally behind to bring from pre-clinical studies to clinical trials for our children. Join us next Tuesday, October 28th, at 11 am PDT via Zoom. As Lafora patient organizations – Chelsea’s […]

Invitation to Join Listening Sessions

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Families and caregivers, you might have seen in our July newsletter that we need your help to establish criteria for Centers of Excellence for treating Lafora disease. As an ultra-rare disease, most hospitals do not know what resources are needed in order to provide the best possible care for our children with Lafora. By establishing […]

Noventia’s Reply to Lafora Patient Community

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Noventia replied to the open letter from the Lafora patient community that they were in the final stages of formalizing an agreement with Fondazione Telethon for the clinical development of ION283. Here are their answers to some of our questions: “• Clinical Trial Phase: We are preparing to submit an application for a Phase 1 […]