We’re inviting our community to take part in the 2026 SMS Community Survey.
This survey is about understanding real experiences of living with Smith-Magenis syndrome, from early years through to adulthood. It looks at education, health, mental health, daily living, employment, and support services, both what’s working and where families and individuals are facing barriers.
The information you share will be used internally to help us:
- Develop and improve our support and services
- Identify gaps in provision across different regions and life stages
- Strengthen our evidence when advocating for better understanding and support
All responses are anonymous. Any personal information you choose to share will not be passed on to anyone else. We’ll publish high-level findings so the wider community can see what we’ve learned together.
Whether your experience has been positive, challenging, or a mix of both, your voice is important.
The survey is open to all caregivers, including parents, carers, siblings, and other family members. Most questions are tick-box style and it should take no more than 10 minutes to complete.
Save the Date, SMS Family Weekend in Liverpool 2026