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World Rare Disease Day: an opportunity to make visible

World Rare Disease Day: an opportunity to make visible
February 26, 2024 – 10:24

It will be celebrated on February 29, 2024. A date to ask for real opportunities.

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Anguish and uncertainty. That’s what my parents felt when they finally discovered my diagnosis back in 1984: Arthrogryposis Multiplex Congenitaone of the over 8000 rare conditions of which one has little knowledge and information. And I constantly think about what would have happened if my treatment had not been successful or I had not had the resources. Maybe I wouldn’t walk or maybe I wouldn’t even be able to move. Or at least that’s what the doctors said. On this arduous path, medical support was essential, early diagnosis and constant work in pursuit of improving the quality of life through supports and tools. However, My luck is not that of many.

This February 29th we commemorate World Rare or Uncommon Diseases Dayan opportunity to claim them and promote its treatment and research to improve the quality of life of so many people who go through invisible conditions. It is no coincidence that this day is dedicated because it is unique on the calendar. And, furthermore, it is a date on which we are presented hope as a driving force understanding that only by looking to the future with optimism can we move forward towards its visibility and recognition since, at the end of the day, A diagnosis is never a closed or delimited destiny. But there are multiple opportunities in which we can work to build that destination in the best possible way.

What are Rare Diseases?

The rare diseases (EPOF or EPF) or rare, are those that present with rare in the general population and affect a reduced number of people in a given population. In our country, in 2011 the National Law on Rare Diseases was enacted. – Law N 26689 -, whose purpose is to promote the comprehensive health care for people with EPF and improve the quality of life of them and their families.

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There are more than 8,000 rare conditions that can affect almost 300 million people worldwide.

There are more than 8,000 rare conditions that can affect almost 300 million people worldwide.

In this sense, it is key to facilitate the right to health of people who experience rare conditions as well as promote early and accurate diagnosis by providing resources and tools. The awareness, research and information, policies that build bridges between a person with a certain condition and their treatment, generation of networks between specialists; These seem to be some of the ways out towards a perspective that tends to think about rare diseases from diversity and not as a mere anomaly or failure of the person.

Source: Ambito

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