News Archive February 2019

28 Feb 2019

Did you know only 7 people per million are diagnosed with the rare liver disease, PSC, each year1?

BBC Radio Northampton interviewed PSC Support Trustee, Karen Rockell about her four rare diseases this morning. She was up and at 'em early talk about living with a rare disease (four in Karen's case), coping with invisible disease, accessing expert care and her experience of participating in the Transplant Games.

Listen from 2:43:43 to 2:49:50 (available until 28 March 2019)

27 Feb 2019

Today PSC Support is at the House of Commons to raise awareness of PSC and its impact on patients. We’re with with fellow rare disease charities, clinicians, health professionals, researchers and industry. We are campaigning for a review of the UK Strategy for Rare Diseases and emphasising the critical need for early and definitive PSC diagnosis and cancer screening, access to co-ordinated and specialist care, and opportunities to take part in research.

26 Feb 2019

In their first major vote on the issue, the Scottish Parliament today approved the general principles of the Human Tissue (Authorisation) (Scotland) Bill by 107 votes to one. Furthermore, the equivalent English legislation passed its final hurdle today in Parliament today. PSC Support submitted evidence to the consultation that took place two years ago while this law was being considered.