An Unknown Reality
In Spain, more than three million people suffer from a reality unknown to many. 80% of cases of these diseases begin in childhood, and currently, 25% of affected children take more than four years to obtain a diagnosis. This harsh reality affects 95% of patients, since they do not have a specific treatment.
A Growing Association
The World Day of Rare Diseases is an opportunity to remember the constant struggle of associations like MPS-Lysosomal Spain. What started with three families, today has more than 500 members. This association, led by Jordi Cruz, has managed to bring together up to 70 different syndromes, becoming a benchmark in the associative world of rare diseases.
A Voice for Awareness
Jordi Cruz, director of the Spanish MPS-Lysosomal Association, is one of the promoters of this fight. Their daughter, Sofia, was born in 1998 with Sanfilippo syndrome, a rare hereditary disease that affects the central nervous system. His personal experience has made him a leading voice for raising awareness about these rare diseases. Despite the advances, he acknowledges that research is slow and the disease remains a major concern.
A Way of Overcoming
The MPS-Lysosomal Association Spain has come a long way. The efforts of the founding families and the support of new members have helped highlight the importance of research and support for these diseases. Despite the challenges, this association continues to fight to improve the quality of life of those affected and promote research in this area.
