THE STORY
OF US
The story of US campaign is centred around the Usher syndrome community. The focus is not just on patients, but vitally - speaks to carers, friends, and MPs too. Click on the ‘Story of Usher Syndrome’ for more. . .
Alex Norris MP
“Back in November 2021, I helped set up the All-Party Parliamentary Group for Usher syndrome, and was delighted to become Chair at the inaugural meeting. The fantastic thing about APPG’s is they are, by their very nature, cross-party. So we have a great opportunity to build awareness across Parliament and push for action to be taken to support those with Usher syndrome and their loved ones.
Usher syndrome is a rare disease that most people know very little about. I’m passionate about harnessing the power of Parliament to raise awareness - and improve the lives of those impacted. When I was Shadow Health Minister, I saw first-hand how little action was being taken on rare diseases, and I am determined to play my part in reversing this.”
Alex Norris MP
Running across the country, the campaign has and continues to…
Encourage additional education on Usher syndrome with GPs and healthcare professionals.
Lobby MPs to raise awareness of Usher syndrome to increase funding and change policies to prompt research.
Campaign for earlier medical referral for genetic testing to aid speedier diagnosis.
Campaign to raise public awareness of Usher syndrome and the red and white striped canes and dogs’ harnesses that represent us.
