Entries by Chelsea's Hope

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 […]