2023-08-24 23:00:17
According to Orphanet estimates there are around 350 million people worldwide who suffer from rare diseases.
Although new pathologies appear continuously, it is estimated that there are between 6,000 and 8,000 pathologies of this type.
Despite the above, in Mexico the General Health Council only recognizes the existence of 23.
Communication emerges as a powerful tool to promote awareness and commitment in the field of rare diseases. A reality that makes it necessary to implement innovative strategies and collaboration between different actors to face the unique challenges that these ailments represent.
One of the big problems when talking about illnesses is that there are many that are ignored and about which very little is known. With this in mind, habitually, attention is only paid to those that are most common and those that generate the most deaths.
Low incidence problems in the world
From the above, the rare diseases they are left behind and for whom fewer drugs and treatments are available. According to the World Health Organization (WHO) they are all those that occur in less than five people per 10,000 inhabitants. If all patients are grouped together, it is estimated that there are 350 million individuals with a problem of this type.
For its part, globally it is estimated that there are between six thousand and eight thousand pathologies that fall into this category. Although in the case of Mexico the General Health Council (CSG) it only acknowledges the existence of 23.
In this context, the consultancy LLYC published the new report The lobby of good: how communication is decisive in the case of rare diseases. The work explores the role of communication in advocacy initiatives in favor of people with these pathologies.
Neglected diseases in Latin America
Within what he mentions is that Latin America lacks public policies related to this type of ailments. according to a study published in February 2023 in The Lancetin countries such as Argentina, Brazil and Chile, the first specific regulations to care for people with rare diseases were approved between 2011 and 2015.
In this context, communication becomes a powerful tool to promote advocacy and advance from individual demand to the legitimization of a collective cause, mobilizing agents, resources and decision-making powers to transform the situation. In addition, continued collaboration between patient organizations, legislators, the pharmaceutical industry, and other stakeholders is essential to achieve significant impact in advocating for policies and resources for these conditions.
“The challenge consists in finding ways to make the voices of people affected by rare diseases more audible, transforming awareness into mobilization and, consequently, into concrete actions that guarantee attention to life,” says Luis Anaya, who He is director of Healthcare Northern Region at LLYC.
He adds that when all the agents involved come together, they not only bring to light forgotten conditions but also build the foundations for a future in which understanding and empathy prevail. By incorporating communication as a transformation tool, a bridge is built that links solidarity to real change.
Also read:
These are the 2 most common rare diseases in women
There are 15 states without hospitals to treat rare diseases in Mexico: This is the list
New rare diseases recognized in Mexico: 3 added to the official catalog
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