Rare Disease Centres get the green light!

Rare Disease Centres get the green light!

Date: 24 Apr, 2024  No Comments

LifeArc launches £40m research centres to hopefully unlock new tests and treatments for people living with rare diseases

The aim of the 4 new LifeArc Translational Centres for Rare Diseases, is that people living with rare conditions will get access to improved tests and treatments.

Bringing together leading rare disease scientists and specialists, these virtual centres will focus on reaching patients with rare diseases and quicken the process of clinical trials and advancements.

ASUK is delighted to be involved in this collaboration across all 4 nations and to be involved in making sure patient and public involvement and engagement is embedded throughout the centre.

Kerry, CEO of Alström Syndrome UK, says:

“We have no specific treatment for Alström Syndrome and when my son, Kion, was a baby, I was told it could take around 10 years for any treatment to be developed. 20 years later, we are still waiting. People living with rare conditions don’t have the luxury of time and the mainstream way of delivering healthcare and drug development rarely works for people with rare conditions. As a mum and the Chief Executive of Alström Syndrome UK, having a centre that will deliver a coordinated, inclusive and supportive approach to accelerate clinical trials gives me great hope.”

You can read the full press release here

Thank you to LifeArc and everyone involved in the development of these new research centres.