This session reframes rare disease as a collectively common experience in schools and explores how unmet medical needs, inconsistent communication and isolation shape pupils’ daily lives. It introduces clear explanations of rare disease, legal rights and the challenges faced by undiagnosed or newly diagnosed children, alongside practical tools for symptom‑cluster awareness, medically informed interventions and effective record‑keeping.

Target audience: SENCO’s / Leaders, Practitioners / Support staff, Parents & Carers, Local Authority Staff

Target Key Stage: Key Stage 2, 3 and 4

Settings Targeted: School, Alternative provision, FE / Higher education
SEND Focus: Rare Disease
Related Policy: 

• Teacher’s Standards (2012) – duty to adapt teaching and know pupils’ needs;
• SEND Code of Practice 2015: 0–25 – identification, graduated response, multi‑agency working;
• Children and Families Act 2014 – rights of families and duties around SEND provision;
• Equality Act 2010 – reasonable adjustments and protection from discrimination;
• Supporting Pupils with Medical Conditions in School (DfE, 2015) – individual healthcare plans and communication expectations;
• KCSiE – safeguarding children with health conditions and vulnerabilities

Audience Stage: Level 1-3
Learning outcomes: 

• Delegates will gain strategies to strengthen communication, reduce isolation through inclusive practice and support siblings.
• The session highlights why current medical‑needs guidance falls short and how schools can build compassionate, proactive systems that ensure every child feels understood, safe and included.