SCN8A Nederland

SCN8A Nederland is a Dutch patient organization dedicated to people with SCN8A syndrome and their families. Founded as a stichting on 4 July 2022 by two mothers of children with SCN8A gene mutations, it works to represent the community’s interests and support better treatments and quality of life. The organization shares information about SCN8A, an extremely rare genetic condition linked to mutations in the SCN8A gene, which can cause epilepsy, developmental delays and movement disorders. Because symptoms and their progression differ from person to person, the site also features stories from Dutch individuals and families affected by the condition.

SCN8A Nederland provides opportunities for peer contact and invites people to get in touch for information or personal support. It explains that there is currently no cure, while treatments such as anti-epileptic medication, physiotherapy, occupational therapy and speech therapy may help manage symptoms. The organization supports research and treatment initiatives, including work on diagnostic and treatment guidelines.