Since 2008 the European organization of minority diseases EURORDIS and its Council of National Alliances launched the Day of Minority Diseases which are also known as "rare" and "orphan".
Although the campaign began as a European event, Minority Disease Day has gradually become a global phenomenon, with 60 official partners of the national minority disease alliance and patient organizations from more than 100 countries worldwide participating each year, and is expected to be recognized by the World Health Organization on the last day of February of each year as World Minority Disease Day.
It must be recognized this February 29 an important day for visibility and the challenges in research, study and care of this group of pathologies that affect 300 million people in the world, and more than 3 million people in Spain and close to 350.000 in Catalonia.
It is a day to focus on a group that, despite being considered small, adds up to a very large group of diseases made up of more than 7.000 clinical conditions that few people suffer from in relation to the population as a wholeoh In Europe, a disease is considered minority when it affects less than one person in two thousand inhabitants (or what is equivalent to <5 cases per 10.000 people). And despite their low frequency, these diseases as a whole they can affect between 5 and 8% of the general population.
The minority diseases they are characterized by a wide diversity of symptoms and signs that vary not only from disease to disease, but also from person to person suffering from the same disease and that vary throughout their life.
around the 80% of rare diseases are of genetic origin and, of them, 70-75% already start in childhood. Minority diseases not only affect the person diagnosed, but also families, carers, the educational field and society as a whole.
Most of these diseases have no cure, and due to the complications, they undermine both their quality of life and autonomy as well as those of their family environment.
According to EURORDIS, 8 out of 10 relatives have difficulty completing daily tasks and 2/3 of caregivers and families spend more than 2 hours a day on disease-related tasks.
So, the approach of a person affected by a minority disease and their families must be multidisciplinary and interdisciplinary and with collaboration between the social, health and education institutions to which this person belongs.
How we treat it at the Aspace Catalunya Foundation
From the Aspace Catalonia Foundation, we work with this comprehensive view and global intervention, and within our collective, our users with minority diseases and their families find a space where the intervention is personalized and careful throughout their lives. Following a multidisciplinary approach model: health, socio-health, social, educational and job reinsertion.
Bibliographic references:
Generalitat de Catalunya Health Channel – Minority Diseases:
Government of Catalonia. (sf). Minority diseases. Retrieved from https://canalsalut.gencat.cat/ca/salut-az/m/malalties-minoritaries/
EURORDIS – European Organization for Rare Diseases:
EURORDIS. (sf). What is a rare disease? Retrieved from https://www.eurordis.org/es/what-is-a-rare-disease/
National Center for Advancing Translational Sciences. (sf). Rare Disease Day. Retrieved from https://ncats.nih.gov/news-events/events/rdd
European Union – European Commission on Rare Diseases:
European Commission. (sf). Rare diseases. Retrieved from https://ec.europa.eu/health/non_communicable_diseases/rare_diseases_en
