The Institut supports World Rare Disease Day

World Rare Disease Day is observed today, Monday February 29. This year’s slogan is “The Patient Voice” in recognition of the key role of those who suffer from the less common diseases. These are pathologies of low prevalence that are life-threatening or chronically debilitating and require special combined efforts to cope with them.

In Europe, an epidemiological limit of 5 cases out of every 10,000 inhabitants has been set to characterise these diseases, i.e. one in every 2,000. This represents up to 250,000 cases or sufferers of each of these diseases in the 27 EU member states. Vision ailments such as Pigmentary Retinosis and Stargardt’s Disease are considered to be rare diseases.

The first Rare Disease Day was observed in Europe and Canada in 2008 to raise public awareness. It takes place on the last day of February each year. Highlighting the voices of those who suffer from rare diseases, Rare Disease Day pays tribute this year to the efforts of those who make their needs heard. The hope is that this will become a driving force for change so sufferers may improve their own lives and those of their relatives and carers. People who live with a rare disease and those around them often feel isolated and it is society, in its broadest sense, which can help them to break out of the isolation their ailment causes.

We at the Institut de la Màcula are aware that it often becomes necessary for sufferers to learn to approach daily situations differently now that they are ill. The role of psychological support becomes vital here and this is why the Institut offers psychological care, in collaboration with the Barcelona Macula Foundation (BMF). The aim of this programme is to equip patients with the knowledge, strategies and resources to face up to their daily activities.