Asociación de afectados de Deleción 1p36

The Spanish Association for 1p36 Deletion Syndrome is a public-benefit organization that brings together affected people, families, healthcare professionals and other organizations. Founded by five families seeking information about a little-known condition, the association works to improve the quality of life and social inclusion of people with 1p36 deletion syndrome and their relatives.

Its work includes gathering and sharing information about the syndrome, medical developments and research, and promoting further research. The association connects families with doctors and hospitals, helps affected people and relatives find guidance, and offers psychological support through members and collaborating professionals. It also encourages activities to support the physical and psychological abilities of affected people, promotes employment-inclusion programs, and maintains contact with similar associations in other countries to exchange knowledge.

Members can receive updates and connect with other families through the association. The organization invites families and supporters to join or contribute, helping more families access information and pursue earlier diagnosis.