Torrejón de Ardoz is marking the Day of Rare Diseases on Saturday, February 28th, with a campaign focused on research, diagnosis, and treatment. The initiative, themed “Because every person matters,” aims to raise awareness and support for those affected by rare conditions.
Raising Awareness in Torrejón de Ardoz
The Spanish Association of Anorectal Malformations and Hirschsprung’s Disease (AEMAREH), the Spanish Association of Congenital Cataracts (ACCESDELUZ), and the Spanish Association for Galactosemia, part of the Spanish Federation of Rare Diseases (FEDER), have established an information booth in the Plaza Mayor. The booth was visited this morning by Mayor Alejandro Navarro and Councilor for Welfare, Education and Immigration, Rubén Martínez.
the Torrejón de Ardoz City Council will illuminate the Town Hall facade in green Saturday evening to increase visibility for these conditions. The Medical Research Association Sanfilippo will also host an information and awareness stand in the Plaza Mayor starting at noon, offering products to fund research.
Advocacy for Newborn Screening
Supporters are gathering signatures at the information booth for universal newborn screening – also known as the “heel prick test” – to ensure early detection of serious congenital diseases. Associations are working to establish this as a right for all newborns.
Rare diseases are defined as those affecting fewer than 5 in 10,000 people in the European Union. However, collectively, these conditions affect approximately 3 million people in Spain. Most rare diseases are genetic and congenital, presenting at birth or within the first two years of life, and often involve severe functional diversity and life-threatening risks.
Frequently Asked Questions
What is the goal of the Day of Rare Diseases event in Torrejón de Ardoz?
The goal is to raise awareness about rare diseases, advocate for research and improved treatment, and show support for individuals and families affected by these conditions.
Which organizations are participating in the event?
The Spanish Association of Anorectal Malformations and Hirschsprung’s Disease (AEMAREH), the Spanish Association of Congenital Cataracts (ACCESDELUZ), the Spanish Association for Galactosemia, the Medical Research Association Sanfilippo, and the Spanish Federation of Rare Diseases (FEDER) are all involved.
What is newborn screening and why is it being advocated for?
Newborn screening, or the “heel prick test,” is a public health program that detects serious congenital diseases early, before symptoms appear. Advocates are working to make it a universal right for all newborns.
How might increased awareness and advocacy efforts impact the lives of those living with rare diseases in the future?
