Entries by Christine Kelly

ION283 Safety Study on ClincialTrials.Gov

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A Safety and Efficacy of Intrathecally Administered ION283 in Patients With Lafora Disease – ClinicalTrials.gov We are thrilled to announce that the ION283 Safety Study information was posted to clinicaltrials.gov. Read the full inclusion and exclusion criteria HERE. Please share the protocol with your clinicians to determine if your loved one is eligible. The essential eligibility criteria […]

Noventia Statement for the Lafora Community

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Noventia Pharma released a statement for the Lafora community that Dr. Gentry read at the 2024 Lafora Disease Science Symposium. Please read it below: Dear Lafora Community, A few weeks ago we finalized an agreement for the rights to ION283, Ionis’ investigational medicine for the treatment of Lafora disease.  Since its founding, Noventia Pharma, a […]

Ionis Statement for the Lafora Community

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Ionis shared a statement with Chelsea’s Hope for the Lafora community. They have agreed to license the ION283 program to Noventia Pharma, and Noventia will assume responsibility for developing it.  The licensing of the ION283 program will not impact the Safety Study. That will continue as planned, and we will update our community as soon […]