For another year, the Barcelona Macula Foundation (BMF) has joined World Rare Disease Day. Its major aims are to raise awareness, educate and inform the population about these pathologies and position them as one of principal public health problems. According to the WHO, there are currently 7,000 rare diseases in the world, with 3,000 people in Spain suffering from one.
BMF’s support for this Day, which is promoted by the international association EURORDIS, is explained by its involvement in the research of two diseases that are regarded as rare: retinitis pigmentosa and Stargardt’s disease, which affects 1 in every 2,000 people and 1 in every 10,000 respectively.
This year’s campaign, whose motto is “Let’s build today for tomorrow”, once again places research in the bullseye. It highlights the importance of research to achieve good prevention, the right diagnosis and the treatments that reverse the damage caused.
Montserrat Vall-llosera, who suffers from Stargardt’s disease, believes that the support of scientific enterprise is crucial as, on having a rare disease “there are fewer resources for research to act quickly and find solutions that bring about an improvement in the quality of life of those who suffer from it”. Manel Martí, who has retinitis pigmentosa, stresses the importance of providing support to research because “everyone is awaiting the news that a cure has been found for this disease”.
Although the road is not easy, there is a firm commitment at the BMF to find a solution for these rare diseases that affect vision and, for this reason, resources will continue to be devoted and the necessary talent developed.