Dr Emma Huskinson, Medical Comms Lead, shares her reflections on representing Medics for Rare Disease at the launch of Rare4Schools at Westminster.

Tuesday was one of those days that I will remember for a long time.

I had the privilege of travelling to Westminster to take part in the Rare4Schools event, hosted by Sarah Hall MP. The event brought together people who share a common ambition: to improve access to education for children and young people impacted by rare disease.

Walking into Westminster and knowing that I was there to represent Medics for Rare Disease was a particularly proud moment for me. Our work is centred around improving understanding of rare disease within healthcare, but this was a reminder that caring for children with rare conditions has to extend beyond the hospital and the clinic.

When rare disease affects education

Around 75% of rare diseases affect children. For these children and their families, life can involve years of uncertainty, appointments, investigations and complex care. The journey to diagnosis can take years – often spanning a significant part of a child’s school life.

Whilst families are navigating all of this, education can fall off the radar for both children living with a rare condition and also their siblings.

Children may miss school because of appointments or hospital stays. They may need adjustments or additional support that their teachers don’t fully understand. Parents can find themselves having to explain their child’s medical needs to school staff, while simultaneously navigating an already complicated healthcare system.

Bringing healthcare and education together

This is why Rare4Schools is so important. The parliamentary event created a space to bring healthcare and education together, and to put the child at the centre.

I was honoured to speak about this from a healthcare perspective and to share why I believe education needs to be recognised as part of a child’s health, wellbeing and development. It was great to stand alongside families, professionals and organisations who are working to make things better. I was proud to be part of a movement that is asking us to think differently about what it means to care for a child living with a rare condition.

Education is part of a child’s future

A child’s health and their education should never have to compete with one another. For children with rare disease, education is not separate from health. It is part of their health, their development and their future.

Congratulations to everyone involved in the launch of Rare4Schools. I am incredibly proud to have been part of this important day at Westminster, and I look forward to seeing where this movement goes next.