Smith-Magenis

Sirius e.V. is a German self-help association supporting people affected by Smith-Magenis syndrome (SMS), their families, and the professionals who work with them. The organisation provides information, guidance and a welcoming community for parents, individuals with SMS, doctors, therapists and educators. Its resources cover the syndrome’s characteristics, diagnosis and genetics, medical care, treatment approaches, sleep, communication, development, education, family life and practical support. Members share personal experience and advice for everyday challenges, school and therapeutic care; the association reports around 190 active members.

Sirius e.V. also brings people together through annual gatherings, regional meetings and online talks. These events combine peer support with presentations and opportunities to consult specialists on topics such as behaviour, emotional development, genetics, sleep and melatonin. The website offers publications, studies, checklists, media resources and information for both families and professionals. Visitors can learn about the association, its activities and ways to participate, including becoming a member or supporting its work through donations.