Supporting families living with Smith-Magenis syndrome, at every stage of life
Living with Smith-Magenis syndrome (SMS) can feel overwhelming, isolating and complex. Families are often navigating sleep disruption, behavioural challenges, education systems, health services and social care with very little understanding or support around them.
At the SMS Foundation UK, we exist to change that.
We support families, carers and professionals by providing practical help, trusted information, emotional support and community connection. Our role is simple but vital: to make life with SMS more supported, more understood, and less lonely.
We don’t offer generic advice. Everything we do is shaped by lived experience, specialist knowledge and the real needs of families living with SMS.
Our Support Services
Carer Support & Family Guidance
From the point of diagnosis onwards, families need someone who understands. We provide direct, personal support to parents and carers through our advisory and guidance service.
This includes emotional support, practical problem-solving, and ongoing guidance as challenges change over time. We aim to respond to all enquiries quickly, with real people, real understanding and real experience.
Our support is relational, not transactional. Families don’t just contact us once they often stay connected over years, because trust, continuity and understanding matter.
Alongside our own support, we work in partnership with Rareminds, a specialist counselling service that provides professional therapeutic support to parents and carers living with the long-term emotional impact of rare and complex conditions. Through this partnership, families can access structured counselling support that recognises trauma, chronic stress, burnout and the psychological toll of caring in high-pressure situations.
This means families are supported both practically and emotionally not just in crisis, but in building resilience over time.
Families come to us for support with:
- Sleep disruption and daily routines
- Behavioural challenges and emotional regulation
- Family stress, burnout and isolation
- Trauma, anxiety and long-term emotional strain
- Transitions across life stages
- Navigating health, social care and support services
This is not a helpline that passes people on. It’s a joined-up support system built around the real needs of families.
Need support for yourself or your family?
Find out more about our Carer Support Service and how we can help.
Education Support Programme
We help families and schools work together to secure the right support for children and young people with SMS.
Our Education Support Service focuses on improving outcomes, reducing breakdowns in placements, and supporting inclusive, meaningful education.
Our work includes:
- Supporting families through education planning and transitions
- Reducing exclusion, escalation and school breakdown
- Guidance around Education, Health and Care Plans (EHCPs)
- Helping schools understand SMS in real-world classroom settings
- Promoting person-centred, trauma-informed approaches
We believe education should work for the child, not the other way around.
Need support with education, school or EHCP processes?
Find out how our Education Programme supports families and schools.
Community, Connection & Belonging
No family should feel alone in a rare condition.
We connect families to each other through our membership network, events, activities and informal peer support. Shared experience matters. Community matters. Feeling understood matters.
Through our community spaces, families find:
- Connection with people who “get it”
- Shared learning and lived insight
- Emotional support without judgement
- A sense of belonging
This is often where families feel safe for the first time.
Looking to connect with other SMS families?
Discover our events, activities and community weekends.
Information, Resources & Practical Tools
We create and share clear, accessible information about SMS for families and professionals.
Our resources are designed to be usable in real life not academic, not overwhelming, and not full of jargon.
This includes:
- Practical guides and toolkits
- Family-focused resources
- Professional information
- Signposting to trusted services
- Easy-to-use support materials
Everything we produce is shaped by what families actually need.
Looking for clear, practical information about SMS?
Explore our guides, tools and trusted resources for families and professionals.
Professional Awareness & Training
Because SMS is so rare, many professionals will never encounter it in their training or careers. That gap in knowledge creates risk, misunderstanding and poor outcomes.
We work to change that by supporting professionals with:
- SMS awareness training
- Specialist guidance
- Evidence-informed resources
- Community-led insight
- Cross-sector collaboration
This improves care, understanding and outcomes for people with SMS across health, education and social care systems.
Are you a professional supporting someone with SMS?
Access specialist training, guidance and SMS awareness resources.
Research, Evidence & Future Change
We listen to families. We gather insight. We support research. And we use evidence to drive better support.
By working with researchers, professionals and the SMS community, we help build a clearer picture of real needs, real challenges and real solutions.
This ensures our work is informed and not just supportive today, but sustainable for the future.
Our Impact
Our support gives families:
- A trusted place to turn
- Clear guidance in complex systems
- Emotional support without judgement
- Practical tools that work in real life
- A community that understands
- Professionals who are better informed
We don’t just provide services.
We build safety, understanding and stability around families.
Because no family living with Smith-Magenis syndrome should have to navigate this alone.