Important communication from Ionis to the Lafora community

September 4, 2024

Dear Lafora Community,

We are pleased to inform you that we have finalized an agreement to license ION283, our investigational drug for the treatment of Lafora disease, to Noventia Pharma, an independent European pharmaceutical company committed to advancing research to bring hope to those living with severe diseases. Noventia will now assume full responsibility for the development and evaluation of ION283.

This licensing agreement represents the culmination of an extensive process undertaken by Ionis to identify a partner for the ION283 program. In our search for a partner, Ionis sought an organization with the dedication and capability required to execute a global development program aimed at evaluating ION283 in Lafora disease. We believe that Noventia possesses the right knowledge, expertise, and passion to move the ION283 program forward.

In the coming weeks, Ionis will transfer materials and data related to ION283 to Noventia. Noventia, together with other stakeholders, will then determine the feasibility of clinical development and the next steps for the program.

We are grateful for the support, collaboration, and perseverance of the Lafora community. We look forward to working with Noventia to accelerate this transition and facilitate the continuation of ION283’s development activities.

Sincerely,
Ionis

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