The Power in a Name: Teaching future doctors the value of providing a definitive diagnosis in the support of patients with rare disease
This week’s blog features one of the outstanding entries we received for our 2018 Student Voice essay competition. Here, Megan McGlone from the University of Glasgow explores the impact of diagnosis on rare disease patients’ ability to identify with a community and receive the support they so urgently require.
Meet our 2019 Patient Engagement Committee! (part I)
After our patient engagement committee kick-off meeting in London last week, we would like to introduce you all to our newly-appointed committee whose expertise will enable us to shape the work we do in the rare disease community!
‘A stepping stone’: David’s clinical trial story
This week’s blog is written by a member of the rare disease community, David Ross, who is currently taking part in a clinical trial for Cowden Syndrome in the hope that it will improve the lives of others suffering from the condition.