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Latest news

Updates on SYNGAP1 research, the community in Portugal and our organisation's activities.

  • Research

    SYNGAP1 census reaches 1,806 patients worldwide

    As of 2Q2026, the census stands at 1,806 patients, an increase of 45 from the previous quarter.

  • Research

    New preclinical data strengthens the potential of gene-targeted therapies

    Results presented at the European rare disease congress show improvements in synaptic function in SYNGAP1 models.

  • Portugal

    The national SYNGAP1 patient registry launches

    A secure platform that lets families in Portugal contribute to international research.

  • Community

    First national family meeting brought together 40 participants

    A day of sharing between families, clinicians and therapists, with practical sessions on communication and epilepsy.