Parliament will host a landmark event on Tuesday 15 September 2026 to mark the official launch of Rare4Schools and the signing of the Rare Disease Education & Family Inclusion Call to Action, a national commitment urging Government to recognise rare disease as a distinct source of educational and health inequality. 

Hosted by Sarah Hall MP, the event Rare Disease & Education: Championing the Whole Child and Family will take place from 2.00–4.00pm in the Jubilee Room, Westminster Hall. Parliamentarians, clinicians, educators, families and advocates will gather to highlight the urgent need for joined-up support for children living with rare diseases. 

Sarah Hall MP said:

“It is a pleasure to sponsor the Rare Disease Framework Network meeting in Parliament on 15 September. I have been working closely with my constituents, Gavin and Joanne Hepherd-Hall, who established the charity Rare4Schools, inspired by their experience of raising a daughter with hyperinsulinism, a rare congenital disease. As teachers themselves, Gavin and Joanne know first-hand the difficulties schools face when supporting and educating children with rare diseases.”

A National Call for Action 

The Call to Action, developed by Rare4Schools and supported by Medics4RareDisease, Rareminds, CamRARE and Intent Health, urges Parliamentarians and policymakers to unite rare disease and education policy. 

It calls for practical action to:

• Embed the Rare4Schools Framework consistently across schools and local systems
• Introduce a Rare Disease Passport for children in schools so vital information follows the child 
• Include teachers and SENDCo leads in multidisciplinary teams so education, health, social care and families plan support together for every child’s needs 
• Equip SENDCo leads with rare disease training and support 
• Ensure Individual Support Plans proposed under SEND reform include a mandatory section on rare disease complexity 
• Secure political leadership to make rare disease visible in education and SEND reform. 

The signing ceremony will invite parliamentarians to add their names to the call to action in support of these commitments.

Launching Rare4Schools 

The event marks the national launch of Rare4Schools, a new initiative aiming to prevent a rare condition from being a barrier to learning. Rare4Schools works to ensure that schools are equipped to understand and respond to the realities of rare disease, recognising fluctuating symptoms, medical vulnerability, emotional impact and the need for coordinated support.

“Once a child with a rare condition enters the school gate, their rights do not pause,” says Gavin Hepherd-Hall, co founder and chair of trustees at Rare4Schools. “Education must be part of the rare disease journey. Rare4Schools is asking Parliament to help build an education system where rare disease is understood, where communication follows the child, and where no child is left invisible simply because their condition is uncommon.”

Joanne Hepherd-Hall, co-founder of Rare4Schools, added: 

“As both a parent and a teacher, I know how important it is that schools are given the right information, confidence and support to understand children with rare diseases. No child should have to miss out on learning, friendship or belonging because their condition is poorly understood.”

Event Programme 

Attendees will hear short presentations from experts and lived-experience voices, including: 

• Professor Jonathan Herring, University of Oxford – The Rights of Children with Rare Diseases 
• Gavin Hepherd-Hall, Rare4Schools – The Case for Inclusive Education 
• Dr Lucy McKay, Medics4RareDisease – The Clinical Perspective 
• Lauren Roberts, Rareminds – Mental Health & Family Experience 
• Sarah Baker, CamRARE – Improving Communication Through the Rare Disease Passport 

Following the presentations, Rare4Schools and supporting organisations will formally sign the Call to Action, with Parliamentarians invited to add their signatures.

Why This Matters 

With the renewal of the UK Rare Disease Framework and ongoing SEND reforms, this event highlights a critical moment to ensure rare disease is recognised within national education policy. 

“Rare disease is not rare when considered collectively,” the Call to Action states. “Millions of people in the UK live with a rare condition, and three-quarters of these conditions begin in childhood. Yet rarity remains an invisible barrier in education.”

Event Details 

Rare Disease & Education: Championing the Whole Child and Family

Tuesday 15 September 2026 | 2.00–4.00pm

Jubilee Room, Westminster Hall, Houses of Parliament

Hosted by Sarah Hall MP

About Rare4Schools 

Rare4Schools is a national initiative dedicated to improving educational inclusion for children and young people living with rare diseases. Through training, resources and policy advocacy, Rare4Schools works to ensure that rarity is recognised as a source of vulnerability and that schools are equipped to respond with confidence, compassion and medically informed understanding.

Media Contact

For interviews, press access or further information, please contact:

Gavin Hepherd-Hall, gavin@rare4schools.org

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