It’s that time of year again!
Mediaplanet and Health Awareness’ Rare Diseases Campaign is back and our CEO, Dr. Rick Thompson, is featured amongst it for the third year in a row.
Much like last year, the Rare Diseases Campaign is run online and in The Guardian. Pick up your copy today to read this year’s rare disease insights and let us know what you think on social media!
What did Rick address in his article?
Rick’s article looks to answer the following question:
Patient groups can play a large role in supporting patients living with rare diseases, but why do they not yet play a formal role within the NHS?
Rick highlights the crucial role that patient groups play in the lives of rare patients and their families. He stresses that patient groups need the recognition and resources from the UK health system to continue their vital work.
“Currently, the best sources of support, knowledge and guidance for rare patients are patient groups. These are communities affected by a rare condition. Many share personal experiences of life with a disease. Others drive research or collaborate with clinicians to form dedicated medical guidelines for their condition. Whatever their mission, patient groups act as a hub of knowledge and, more importantly, help patients live with their rare disease.”