Political momentum grows as Europe focuses on rare diseases

4 March 2024
european_union_commission_brussels_large

Drugmakers, patient advocate groups, policymakers and others have come together for Rare Disease Day, which took place at the end of February, to both celebrate progress and call for more action in this therapy area.

In the UK, Genetic Alliance sought to highlight the fact that rare diseases are collectively common, although individually rare, with data showing that 1 in 17 people will be affected by a rare condition at some point in their lives.

The group is currently working on research projects including an evaluation of rapid genome sequencing (rGS) for seriously ill children at Great Ormond Street Hospital NHS Foundation Trust and the Institute of Child Health.

This article is accessible to registered users, to continue reading please register for free.  A free trial will give you access to exclusive features, interviews, round-ups and commentary from the sharpest minds in the pharmaceutical and biotechnology space for a week. If you are already a registered user please login. If your trial has come to an end, you can subscribe here.

Login to your account

Become a subscriber

 

£820

Or £77 per month

Subscribe Now
  • Unfettered access to industry-leading news, commentary and analysis in pharma and biotech.
  • Updates from clinical trials, conferences, M&A, licensing, financing, regulation, patents & legal, executive appointments, commercial strategy and financial results.
  • Daily roundup of key events in pharma and biotech.
  • Monthly in-depth briefings on Boardroom appointments and M&A news.
  • Choose from a cost-effective annual package or a flexible monthly subscription
The Pharma Letter is an extremely useful and valuable Life Sciences service that brings together a daily update on performance people and products. It’s part of the key information for keeping me informed

Chairman, Sanofi Aventis UK



Today's issue

Company Spotlight





More Features in Pharmaceutical