This year’s World Rare Disease Day focuses on the voices of patients
The international association, EURORDIS, is the promotor of the annual observance of Rare Disease Day on the last day of February. This year’s slogan is “The Patient’s Voice” and it seeks recognition for the key role of those who suffer from the less common diseases and are the driving forces for change to improve their own lives and those of their relatives and carers. People who live with a rare disease and their families often feel isolated and it is society, in its broadest sense, which can help them to break out of their isolation.
The BMF works actively to discover therapeutic solutions for two diseases that are considered to be rare: Pigmentary Retinosis and Stargardt’s Disease. In Europe, diseases are rare if they affect 5 out of every 10,000 inhabitants, that is, one in 2,000. This figure represents up to 250,000 cases of each of these diseases in the 27 EU member states. Pigmentary Retinosis affects one in every 2,000 people and is the principal cause of total blindness in the world. Incidence of Stargardt’s Disease is around one in every 10,000 people, with the ailment tending to affect adolescents and young adults of under 20 years old.
As in other years, events have been scheduled worldwide to disseminate, raise awareness and foster research. The commemorative video released this year focuses on the special moments in the lives of those who suffer from a rare disease.