BE WELL-INFORMED TO FIGHT AGAINST RARE DISEASES

Published by ICSEB at 28 February, 2020

In the context of the Rare Disease Day on 29 February, the Institut Chiari & Siringomielia & Escoliosis de Barcelona (ICSEB) draws attention to the importance of a correct diagnosis and treatment. In fact, erroneous information can lead to taking the wrong decision, with possible serious consequences for the patient’s health.

Therefore the ICSEB, together with the Chiari & Scoliosis & Syringomyelia Foundation and the Filum Academy Barcelona, promotes research, training and dissemination of knowledge about the Filum Disease, which includes conditions that are currently considered to be rare.

Arnold-Chiari Syndrome type I and Idiopathic Syringomyelia are among these conditions and share the same root cause – the anomalous traction that an overly tense Filum Terminale exerts on the spinal cord and the entire nervous system. Today for both conditions there is a minimally invasive treatment that allows avoiding severe complications (or even death).

Spreading information can save lives. This 29 February – and the rest of the year – fight against Rare Diseases!