For Mental Health Awareness Week

For most children, school is a place to learn, make friends and grow. But for thousands of pupils living with a rare disease and the families who walk beside them, school can also be a source of anxiety, isolation and uncertainty. This Mental Health Awareness Week, we’re shining a light on a reality that is too often overlooked: the emotional toll of navigating education with a rare condition.

The weight of being “the only one”

With more than 7,000 known rare diseases, most teachers will meet a child with a rare condition at some point in their career yet awareness remains low. For pupils, this often means being the only one in their school or even their local area, with their condition. That sense of rarity can quickly become a sense of otherness.

Children tell us they worry about being misunderstood, judged, or left out. They fear being seen as “different” or “difficult”. Many mask symptoms to avoid attention, pushing themselves through pain, fatigue or medical needs just to blend in. Over time, that takes a toll on confidence, self‑esteem and emotional wellbeing.

The diagnostic odyssey doesn’t end at the school gate

Families living with rare disease know the emotional strain of the diagnostic journey the uncertainty, the appointments, the waiting, the fear of not being believed. But what’s less recognised is how this continues once a child enters education.

Parents describe the anxiety of handing their child over to a setting that may never have heard of their condition. They worry about safety, about symptoms being missed, about staff feeling unprepared. Children pick up on that stress too. When school doesn’t feel safe, learning becomes secondary to survival.

Fluctuating needs, fluctuating emotions

Many rare conditions come with symptoms that change day to day; pain, fatigue, blood sugar instability, seizures, sensory overload, gastrointestinal issues. These fluctuations can be frightening for children and challenging for schools to interpret.

Without clear guidance, pupils may be labelled as inconsistent, unmotivated or “fine yesterday”. This misunderstanding can lead to frustration, shame and a sense of failure. When a child feels they are constantly having to justify their needs, their mental health suffers.

Bullying and belonging

Research shows that children with rare diseases are at increased risk of bullying and social exclusion. Sometimes it’s overt; comments, jokes or targeted unkindness. Sometimes it’s subtle; being left out of games, not being invited to parties or being treated differently by peers who don’t understand.

Belonging is a basic human need. When it’s missing, the emotional impact is profound.

Families carry the emotional load too

Behind every child with a rare condition is a family navigating fear, advocacy, exhaustion and hope. Parents often become medical experts, care coordinators and educators overnight. They carry the emotional weight of ensuring their child is safe at school while trying not to overwhelm staff.

This constant vigilance affects parental mental health and when parents are struggling, children feel it.

The good news is that small, intentional actions can make a huge difference:

Awareness: Understanding the basics of rare disease reduces fear and increases confidence.
Symptom thinking: Recognising patterns rather than diagnoses helps staff respond quickly and compassionately.
Flexible support: Adjustments that adapt to fluctuating needs protect both learning and wellbeing.
Open communication: Families feel safer when they know they’re heard.
Belonging‑centred practice: Inclusion isn’t a policy, it’s a culture.

When schools get this right, children thrive. Their confidence grows. Their anxiety reduces. They feel seen, understood and valued. And that is the foundation of good mental health.

Why Rare4Schools is taking action

We believe that a rare diagnosis should never be a barrier to learning or to emotional wellbeing. That’s why we’re working nationally to:

raise awareness of rare disease in education
equip teachers with the knowledge they need
support families through transitions
create pupil‑friendly resources that build empathy and understanding
ensure every child feels safe, included and able to flourish

Mental Health Awareness Week is a reminder that wellbeing is everyone’s responsibility. For children with rare diseases, that responsibility begins with awareness and grows through action.

Rare disease may be individually rare, but the emotional experiences of these children are collectively common. When we understand the mental health impact, we can change it. And when we change it, we change lives.

When School Isn’t Simple: The Hidden Mental Health Impact of Rare Disease