Rare Disease Day 2025

Nerve Tumours UK, as a founding member of the Genetic Alliance, joined their 2025 Rare Disease Day Campaign: More than you can imagine: Opportunities for improving the lives of people living with rare conditions.

Rare Disease Day is an important international awareness day that takes place annually on 28 February (or 29 February in leap years). This date was chosen because 29 February is the rarest day of the year. Thousands of rare disease organisations from around the world participate in every Rare Disease Day, representing the nearly 300 million people living with a rare condition globally. Rare Disease Day is marked through Parliamentary receptions organised by the Genetic Alliance in Westminster and the devolved administrations in Scotland and
Wales bringing together rare disease charities, key stakeholders in the medical sector and parliamentarians.

The aims of Rare Disease UK are to:

•  Raise awareness of all rare conditions across the UK specifically for us to give the NF community a voice, pushing for lasting change that improves the lives of everyone affected by a rare condition. The major driver for this is Rare Disease Day.

• Ensure that the UK and devolved nation governments are accountable for implementing the UK Rare Diseases Framework, a policy setting out a vision of how to improve the lives of people living with rare conditions across the UK.

•  Capture the experiences of living with a rare disease, meaning that the challenges of living with rare conditions can be better understood and better interventions and policies developed as a result.

Nerve Tumours UK Social Media Campaign

Using all available social platforms we highlighted the voices of those with visible differences within the NF community and how we are driving real change and addressing ongoing discrimination - challenging perceptions, shaping policy, and rewriting the narrative around rare conditions.

Watch the campaign videos

Rare Disease Parliamentary Reception:  Westminster Palace on the 27th  March 2025

On the eve of Rare Disease Day, Nerve Tumours UK attended a Reception, hosted by Liz Twist MP and Peter Dowd MP on behalf of the Genetic Alliance.

Nerve Tumours UK are one of the founding members of the Genetic Alliance, working together to raise awareness and campaign for those affected by rare diseases.

We were delighted to join the event held at the Houses of Parliament which brought together health professionals, policymakers, researchers, people living with rare conditions and
support organisations, such as ourselves.

The keynote speech delivered by Ashley Dalton, Parliamentary Under- Secretary of State for Public Health and Prevention, focused on the rare diseases community and taking the action plan forward.

Nerve Tumours UK and other attendees had an invaluable opportunity for networking, sharing ideas and best practice, and were also able to view the anthology exhibits.

This week we also joined the virtual nationwide reception, which brought together representatives from England, Scotland, Wales and Northern Ireland, in which all four nations reported back on the implementation and progress of the Rare Disease UK framework setting out a coherent, national vision in accordance with the UK Government’s vision for how it plans to improve the lives of people living with rare conditions.

Further Reading 

More than you can imagine: Opportunities for improving the lives of people living with rare conditions

More than you can imagine: anthology of rare experiences; is a collection of
stories, poems, artwork & photography inspired by personal experience and
creatively told.