PTEN Power Hour - Future For Rare
Online event
Tuesday, May 19 • 7:30 PM - 8:30 PM GMT+1
Overview
Your voice matters! We need to understand what matters to you most and what challenges you still face.
The current UK Rare Diseases Framework’s five year deadline has been extended until January 2027. The Minister with responsibility for rare conditions has requested that the four nations submit their proposals for the future of rare conditions policy by autumn 2026.
The voices and lived experiences of the rare community are essential to inform these governmental decisions. By coming together to share our views we will be able to help shape future policy!
We have been asked to conduct this session by Genetic Alliance who recognise the importance of patient voice. Taking the responses of our community forward before the end of May is vital for future policy decisions.
Your voice matters! We need to understand what matters to you most and what challenges you still face.
The current UK Rare Diseases Framework’s five year deadline has been extended until January 2027. The Minister with responsibility for rare conditions has requested that the four nations submit their proposals for the future of rare conditions policy by autumn 2026.
The voices and lived experiences of the rare community are essential to inform these governmental decisions. By coming together to share our views we will be able to help shape future policy!
We have been asked to conduct this session by Genetic Alliance who recognise the importance of patient voice. Taking the responses of our community forward before the end of May is vital for future policy decisions.
Good to know
Highlights
- 1 hour
- Online