SMA Support UK and the SMA Trust at Rare Disease Day 2017
02 March 2017
Each year at the end of February, Rare Disease Day is organised to raise awareness about rare diseases and the effect that they have on the lives of patients, their families, and society.
In the European Union, a disease is defined as rare when it affects no more than 5 people in 10,000. This classification differs slightly from the US, where a disease is defined as rare when it affects fewer than 200,000 Americans in total (this is approximately 1 in 1,600).
It is vital therefore that the burden of rare conditions is highlighted to increase their visibility amongst the public and politicians. This is especially true when you consider that although rare diseases are individually not common, when combined they affect a large percentage of the population.
Rare Disease Day 2017 was held globally on February 28th, and is co-ordinated by the patient-driven alliance representing rare disease, EURORDIS.
SMA Support UK and the SMA Trust shared a stall at Royal Holloway’s annual Rare Disease Day event on February 24th. Our Scientific Research Correspondent, James, and Vanessa Christie-Brown of the SMA Trust provided SMA-related information, activities, and games for local school and sixth form college students.
Organised annually by SMA researcher, Dr. Rafael J. Yáñez-Muñoz, the day at Royal Holloway gives students the opportunity to learn about rare diseases and how they impact patients and their families.
The day included lectures about rare disease, laboratory activities, and exhibitions from a number of other societies and charities supporting rare conditions.