Facts Behind The Stories

Nerve Tumours UK joined the Rare Disease Day events organised by the Genetic Alliance.

Being one of the founding members, we attended both the Cross Country Parliamentary and online meetings.

This is a long-standing and pioneering national campaign on Rare Disease Day that represents and unites everyone in the rare disease community. Our aim is to highlight and raise awareness for those affected by NF1, NF2 - Schwannomatosis and Schwannomatosis.  

On Rare Disease Day, 29th of February 2024, the NTUK head office team attended the Parliamentary Reception in Westminster alongside 200 members of the Rare & Genetic Diseases Community. On the 20th of February 2024, our regional Specialist NF Nurse, Helen Swann and Prof Meena Upadhyaya, OBE and Member of the NTUK Board of Trustees attended the Devolved Administration Meeting in Wales. 

Additionally, we attended The Joint National Online Event on 4th of March, listening to each nation of the UK discussing their progress implementing their Rare Diseases Action Plans.

The theme of this year's Rare Disease Day campaign was focussing on highlighting data about rare conditions and the facts behind the stories.

Rare conditions are collectively common and can affect anyone of any age, gender or ethnicity. Additionally one of the highlights was to showcase the variety of experience in the care of people with rare conditions.

Check out our news section where various NF community members have shared their story to raise awareness and highlight that more support is needed. 

"For Rare Disease Day 2024, we want to highlight three key facts and figures to focus the minds of politicians, journalists, NHS staff and other stakeholders on these shared challenges.

These are:

● Although rare conditions are individually rare they are collectively common, affecting 3.5 million people in the UK. 

● It is currently estimated that there are over 7,000 rare conditions, with new conditions regularly identified through scientific progress. 

● 8 out of 10 rare conditions are caused by a change to someone’s genetic code. All figures are taken from the UK Rare Diseases Framework so we are using a reference point that is shared with decision-makers. 

For Rare Disease Day 2024 we have developed a policy report to break down these numbers in a usable way, as well as shareable graphics to illustrate them. Alongside the statistics, we want to tell the stories of the people behind them. We want to show that although rare conditions are individually rare, they are collectively common."

- Genetic Alliance

UK Rare Diseases Framework and Action Plans:   

Read the report here and find links for each country's government updates

Earlier in February, Nerve Tumours UK attended the SHCA (Specialised Healthcare Alliance), of which we are members to gain further insights into the rollout of the UK Rare Diseases Framework, which was addressed by Lord Nick Markham, Minister for the Lords at the Department of Health and Social Care (DHSC, and on the progression and learnings from the rollout. The third plan under the UK Rare Diseases Framework was published on World Rare Diseases Day 29th of February 2024. 

#MakeNFvisible not only on World Rare Diseases Day but to share your story by contacting info@nervetumours.org.uk to raise awareness!