New international group seeks to raise the profile of rare diseases
A new group that aims to push rare diseases as an international health priority met for the first time in Madrid, Spain last week (28 May, 2015).
The group, named Rare Diseases International, was set up by the European Organisation for Rare Diseases (EURORDIS) and brings together 60 patient representatives from 30 different countries.
Rare diseases are still widely misunderstood by major healthcare organisations, and many rare conditions still do not have approved treatments.
Rare Diseases International is keen to raise awareness of rare diseases globally, particularly among the institutions that fund research, and to encourage pharmaceutical companies to do more to help find treatments for them.