LEONA e V

LEONA e. V. is a German family self-help organization that has supported families affected by rare chromosome changes since 1992. It provides information, peer connection and practical support for parents and siblings navigating diagnosis and daily life. Its online resource portal brings together introductory guidance on chromosome disorders and syndromes, early help following the birth of a child with additional needs, links to information and advice services, and personal accounts from families. Topics include prenatal diagnosis, everyday care, social and legal matters, grief, and the needs of siblings.

For members and families seeking contact, LEONA offers opportunities to exchange experiences and advice through a family forum, online meetings and in-person family gatherings. The organization also arranges contact between families, provides materials such as brochures, books, videos and downloads, and shares news, research surveys and event information. Dedicated resources address bereavement and sibling support, including activities and forums for siblings and adult siblings. Through its network, information and family-focused programs, LEONA aims to strengthen and encourage people facing challenging circumstances.