Fighting Blindness is actively involved in advocating on behalf of patients at a national and international level, ensuring the patient voice is represented in all matters.
Many conditions causing sight loss are classified as a rare disease. As well as providing information about these rare conditions to people who have been diagnosed, Fighting Blindness is funding and promoting research to find treatments and cures for these conditions. On behalf of our members we advocate for better services for people with rare diseases, including access to a genetic diagnosis and appropriate therapies when they become available.
As part of this work, Fighting Blindness is a member of the Genetic and Rare Disorders Organisation (GRDO) which is an alliance of rare disease groups in Ireland. We are also a member of the European and Rare Disease Organisation (EURORDIS). Fighting Blindness CEO Avril Daly is the current Chair of GRDO and Vice-President of EURORDIS.
It has been an active couple of weeks for the rare disease community with many new developments in Ireland, Europe and internationally.