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 […]

Clinical journal Oncology Practice regarding the importance of Quality of Life (QOL) as perceived by patients.

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.

Some Olympic procession fever and fun – for your enjoyment.

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.

Times news article on rare diseases featuring MDS UK, published on 10/07/12

Read the full article on Sapacitabine trials on The MDS Beacon

Watch a European Journal of Cancer (EJC) video discussing: How to address the key challenges in medical oncology?

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 […]

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.