According to FEDER, “rare diseases (RD) are diseases that have a low prevalence in the population. To be considered rare, each specific disease can only affect a limited number of people. Specifically, when it affects less than 5 per 10,000 inhabitants”.
Today, if we look at the data, we know that there are around 7,000 #EnfermedadesRaras; that approximately 7% of the world’s population suffers from one of them and that, in Spain, the number rises to 3,000,000 people.
When we talk about the US everything seems to boil down to a number. However, in Pëtri, everything focuses on one name: on Ana, diagnosed with haemophilia two years ago; on Pedro, diagnosed with Fabry disease since the age of 20; or on Carmen, who has suffered from hereditary angiodema for more than a decade. For us, it all comes down to the patients, the people and the need and ability to improve the diagnosis, approach and treatment of their pathologies.
At Pëtri, we work hand in hand with different agents of change, through the development of projects that help us to give greater visibility and generate knowledge about this type of disease.
That is why, in 2021, we helped write, map and design the Galician Health Service’s “Galician Strategy on Rare Diseases 2021-2024”. An innovative, patient-centred strategy that opens the door to a new approach and model of care for RRH. in our community with the aim of improving people’s quality of life.
Because, at Pëtri, we know that what matters are not numbers, lists or statistics, but the people behind the data.
Because they are less common, but not necessarily more invisible.