June 15 - 09:00 am


May 17 - 11:00 am

*This is an invitation only event*

Rare, genetic and undiagnosed conditions affect around 3.5 million people in the UK, with 70 per cent being life-long conditions. Since 2013, there has been an enhanced focus on rare diseases by the Department of Health and Social Care (DHSC), NHS England and the devolved nations. This has come in the form of various frameworks, strategies, and new bodies, including Genomics England.

The new five-year UK Rare Diseases Framework, released in January 2021 presents an opportunity for the rare diseases community to support the creation of each UK nations action plans, ensuring the framework is implemented successfully.

The pandemic slowed down access for many patients with rare diseases over the past year. However, this roundtable looks to evaluate the access to specialist care and improve the reliability of treatment options for patients.

The rare diseases coalition is sponsored by Kyowa Kirin and Mendelian and chaired by Baroness Nicola Blackwood, PPP and Nick Meade, Genetic Alliance UK

  • 15 Jun, 2021 09:00 - 11:00 BST
  • Virtual, Zoom webinar See map

Public Policy Projects
  • 0207 8399305

ISSN Number: 2517-2662