This article talks about various issues around rare conditions and the orphan drugs that are needed to treat those conditions. It deals with the difficulty in diagnosing rare conditions, the costs of drug development, the role of pharma companies, the investment needed, the cost-effectiveness process applied and what European governments and other stake-holders need to […]Read full story
Clinical journal Oncology Practice regarding the importance of Quality of Life (QOL) as perceived by patients.Read full story
If you are using a Hickman line – we have received the following tip and new device from a patient, who invented a special holder that makes the central line a little more comfortable.Read full story
Some Olympic procession fever and fun – for your enjoyment.Read full story
Patient participants needed for a survey regarding issues of access to medicines.
This survey is being conducted by a researcher at LSE – London School of Economics – as part of a study looking at problems patients have in accessing their medicines.Read full story
Times news article on rare diseases featuring MDS UK, published on 10/07/12Read full story
Read the full article on Sapacitabine trials on The MDS BeaconRead full story
Watch a European Journal of Cancer (EJC) video discussing: How to address the key challenges in medical oncology?Read full story
Rare Diseases UK have been contacted by Julie Cook, a freelance journalist for women’s magazines such as Bella and Women’s Own, who has an interest in rare diseases. She writes for the health pages of these magazines and is interested in doing an article on a family affected by a rare disease that they would […]Read full story
MDS Day conference for MDS physicians, scientists and clinical nurse specialists – 21/11/2011
MDS patients – please inform your local clinical staff of this event.