Rare4Schools & Parliament

Driving Change for Children with Rare Conditions

Rare4Schools is working closely with parliamentarians across both Houses of the UK Parliament to influence meaningful, long‑term change in education policy. Our goal is clear: to ensure that every child with a rare disease has equal access to learning, safety and support in school.

This work is a vital part of our mission to make sure rarity is never a barrier to education.

Our Work in Parliament

Rare4Schools has engaged with Members of the Commons (MPs) and Members of the House of Lords (Peers) from across the political spectrum. This cross‑party support is essential; real change in education requires collaboration, consistency and commitment that transcends political cycles.

Through the support of parliamentarians:

  • Questions have been raised in Parliament about the challenges faced by children with rare conditions.

  • Debates have been initiated, including a Westminster Hall debate that brought national attention to the issue.

  • Meetings with ministers have helped highlight the urgent need for improved guidance, training and support for schools.

  • Awareness of rare disease in education has grown, reaching policymakers, civil servants and national organisations.

This work is ongoing, strategic and growing in momentum.

How Parliamentarians Support Change

Parliamentarians play a crucial role in driving improvements for children with rare conditions:

  • MPs can raise debates, ask parliamentary questions, and meet with ministers to highlight gaps in education and health policy.

  • Peers often focus on legislation and can champion issues that require long‑term structural change.

  • Both Houses can work together to press the government for action, ensuring rare disease is recognised as a national education priority.

This collective effort helps build a future where every school is equipped to support children with rare conditions confidently and safely.

How You Can Help

Families are at the heart of this movement. Your experiences shape our advocacy and strengthen our voice in Parliament.

You can support this work by:

  • Sharing your story; have you spoken to your MP before?

  • Telling us who your MP is (so we can connect your experience to local advocacy)

  • Inviting your MP to Rare4Schools parliamentary events

  • Following our updates on parliamentary activity

  • Signing up to get involved in future campaigns and events

Why Parliament Matters

Parliament is central to shaping the policies that affect schools, families and children across the UK. Understanding how it works helps families see how their voices can drive real change.

Making Laws

Only Parliament can create or amend laws. Any new policy or statutory guidance must be approved by both the House of Commons and the House of Lords.

Scrutiny & Accountability

Parliament holds the government to account by:

  • Questioning ministers

  • Debating key issues

  • Investigating through select committees

This ensures decisions are transparent, evidence‑based and in the public interest.

Representation

MPs represent local communities.
Peers bring specialist expertise.
Together, they ensure a wide range of voices including families affected by rare diseases are heard at national level.

Together, We Can Make Change Happen

When families, educators and parliamentarians work together, change becomes possible.
By raising awareness, sharing lived experiences and building strong partnerships across Parliament, we can ensure that no child with a rare condition is left behind in education.

Upcoming Campaigns & Events

Campaigns

  • Symptom Cluster Awareness

  • Rare Disease Day - Wear Your Striped Socks

Events

  • 2026 Parliamentary Roundup
    A gathering of rare disease organisations and partners at Parliament.

Join our mission