Asociación Española Síndrome de Sturge Weber

The Asociación Española Síndrome de Sturge Weber (AESSW) is a Spanish association supporting people affected by Sturge-Weber syndrome and their families. The condition is a rare, non-hereditary vascular malformation that develops during pregnancy and may affect the skin, eyes, and brain. Its possible manifestations include a port-wine birthmark, leptomeningeal involvement, and glaucoma; symptoms and progression vary from person to person.

AESSW provides accessible information about the syndrome, its associated manifestations, diagnosis, potential effects, and treatments. Its website also offers guidance for people who have recently received a diagnosis, information about assistance and administrative procedures, and recommended links and agreements. Visitors can read blog articles and news, watch videos from collaborators, and learn about the association’s board and community.

AESSW invites people to join as members or “friend members” and welcomes donations and other forms of collaboration. The association is registered with Spain’s National Registry of Associations and is a member of the Spanish Federation of Rare Diseases (FEDER)