United for a cure for SYNGAP1.

• Census1 September 2026

  SYNGAP1 Census 2026: 1,806 cases worldwide

  The number of people diagnosed with SYNGAP1 reached 1,806 cases worldwide in the second quarter of 2026. That is 45 more cases than the previous quarter. Source: Cure SYNGAP1, Census, Citizen Health.

• Clinical trials27 July 2026

  CAMP4 starts clinical trial for SYNGAP1

  CAMP4 Therapeutics received clearance in Australia and Argentina to start the first human trial of an antisense (ASO) therapy targeting SYNGAP1. The trial is expected to include at least 30 children and young people aged 2 to 18.

• Research14 May 2026

  New therapy reduces seizures in SYNGAP1 model

  New CAMP4 preclinical data show that the therapy significantly reduced the frequency and severity of epileptic seizures in a SYNGAP1 animal model. The results reinforce the potential of this approach to treat epilepsy and other symptoms associated with SYNGAP1 deficiency.

• Diagnosis1 September 2026

  13 people diagnosed with SYNGAP1 in Portugal

  Cure SYNGAP1 Portugal's provisional registry currently identifies 13 people diagnosed with SYNGAP1 in the country. Every registration helps make Portugal more visible to international research.

For families

Resources for families

Practical guides, written in plain language and reviewed by health professionals.

• DiagnosisGenetic testing, results and first steps.
• EpilepsySeizure types, medication and emergency plans.
• DevelopmentMilestones, early intervention and autonomy.
• CommunicationSpeech, AAC and assistive technology.
• SleepRoutines, common difficulties and strategies.
• BehaviourSelf-regulation, anxiety and strategies at home.
• SchoolInclusive education, support measures and coordination.
• TherapiesPhysiotherapy, speech and occupational therapy.
• Rights and support in PortugalCertificates, benefits and social support.
• Clinical trialsHow they work and how to take part.