Today, the not-for-profit medical research organisation LifeArc launched a new report with the aim of driving meaningful change for people living with rare diseases in the UK.
Last year, LifeArc and Genetic Alliance UK convened over 40 voices from across the rare disease sector, including our CEO Dr. Rick Thompson, to have open, honest, conversations about the barriers stopping treatments from getting to those who need them and the possible solutions that could change the story.
The report – Accelerating R&D for rare disease in the UK: An opportunity to change millions of lives – makes 10 recommendations calling for action, including:
Better routes to diagnosis, and better data collection on rare diseases
An update to the UK Rare Diseases Framework
New approaches to assessing the value of treatments, to help show that many rare disease drugs do offer value for money
Better support to help researchers navigate the complex processes involved in developing drugs
The report – Accelerating R&D for rare disease in the UK: An opportunity to change millions of lives – is now available to download here.
LifeArc is keen for as many people as possible to join the conversation on social media using #ChangeTheRareFuture, so get involved today by sharing their posts on LinkedIn and X!
If you’d like to hear from our CEO, Dr Rick Thompson on why LifeArc’s new report matters and why he jumped at the chance to be involved in its Task Force, watch his video now!
