Entries by Christine Kelly

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 […]

ION283 Safety Study Approved

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We just learned from Dr. Minassian that the FDA has approved the ION283 Safety Study! We are so grateful for your continuous support, for Dr. Minassian and his team at UTSW, Dr. Messahel, IONIS, and everyone involved for getting us here. Our patient community has been a driving force in supporting reaching this stage and […]