APERTcras

APERTcras, the National Association for Apert Syndrome and other syndromic craniosynostoses, supports individuals and families navigating rare diagnoses. With more than 27 years of experience, the association has welcomed over 80 families and provides practical guidance, reliable medical information, psychological support, social work assistance, specialist events, and a community where people can connect with others who understand their experiences. Its information covers Apert, Crouzon, Muenke, Pfeiffer, Saethre-Chotzen, and Goldenhar syndromes.

APERTcras also offers family support through a Madrid accommodation facility and has conducted more than 500 consultations. The organization invites families, affected individuals, and supporters to get involved through membership, donations, and its Teaming initiative, which allows contributions of one euro per month. Donations help fund resources, research, and direct assistance for families.

APERTcras also promotes inclusion through its children’s book, Las manos capaces de Jaime, whose proceeds support research into the rare syndromes represented by the association. Its work centers on treating each person as more than a diagnosis and helping families find clear information and a supportive path forward