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Atypical Hemolytic Uremic Syndrome (aHUS) International Day: 24th September, do not miss it!

Organizations from 13 countries promote September 24 as aHUS worldwide day to give visibility to this very rare disorder

September 16, 2015

Next September 24th will be held for first time the Atypical Hemolytic Uremic Syndrome (aHUS) International Day. “With the aim of increasing public awareness about this very rare disease, several activities, such as the recording of a commemorative video showing the reality of this pathology, will take place around the world” states Francisco Monfort, president of Spanish Association for aHUS (ASHUA). Spanish collective, who promoted the creation of aHUS Alliance, will be one of the coordinator in this international day.

aHUS is a disease which mainly affects to kidneys, although it also can damage other organs, such as brain, livers, lungs, heart or gastrointestinal system. This pathology derives from an improper activation or over-activation of the complement system, leading to immune system failure. Its incidence is 2 cases/million habitants.

A fast diagnosis is decisive in order to begin with the proper treatment and prevent from serious complications, such as ictus, renal failure, heart attack or even, death of the patient. It is estimated that around 10% patients dies in the first year from the moment of diagnosis. However, aHUS is one of the few ultra rare diseases with an efficient treatment (eculizumab, Soliris), which can avoid most of complications.

Since its creation, one of the main objectives of ASHUA has been to connect patients affected by this syndrome with health professionals and researchers in the field in order to improve the efficiency in treatments and to reduce the time required until final diagnosis is reached. In this context, Francisco Monfort declared in the last aHUS Alliance meeting held in London that “Spanish medicine is at the forefront of research and knowledge of the syndrome, as well as tailoring new drugs for patients. This situation derives from all the efforts invested by every member of the patient collective and dedication of the outstanding health professionals and researches, helping and taking care of us by improving treatments, avoiding transplants and saving lives”.

Visit the ASHUA website and get involved in the worldwide activities that are waiting for you!
 

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