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New GEEDL en-LISOS magazine

Hematologists promote an online publication on lysosomal diseases aimed at the Hispanic community

Regarding Lysosomal Diseases, Dr. Pilar Giraldo, president of the Spanish Group of Lysosomal Storage Diseases (GEEDL), of the Spanish Society of Hematology and Hemotherapy (SEHH), comments that “they constitute a very heterogeneous group of rare diseases that they share clinical manifestations and/or complications that appear in other patients with more frequent hematological pathologies and that, therefore, require rigorous differential diagnosis studies”.

The new online magazine en-LISOS, in which our association is going to collaborate actively, is a publication in Spanish that is launched in collaboration with other Spanish-speaking countries, such as Mexico and Argentina, "the latest advances and research of interest on lysosomal storage diseases, as well as testimonials from patients that help us assess their needs”, says the expert. This initiative attempts to cover the need to spread knowledge about this group of rare diseases.

In this first issue, you can find on page 34 an article written by Eduardo, the president of AELALD, in which he talks about the process from the beginning of the diagnosis of a patient affected by a rare disease:

 

We are sure that this initiative will greatly help the community and will serve to give visibility to a disease as unknown and underdiagnosed as Lysosomal Acid Lipase Deficiency.