World Rare Disease Day 2023

Published by ICSEB at 28 February, 2023

On the occasion of World Rare Disease Day, 28 February each year, we emphasize that Arnold-Chiari syndrome I and syringomyelia are not uncommon to our experts because of their incidence and number in the population. However, they are “orphan” because they have other typical features of this type of disease.

The Institut Chiari & Siringomielia & Escoliosis de Barcelona (ICSEB) follows the Dr. Miguel B. Royo Salvador’s theory of caudal traction. This theory considers that what causes the cerebellar tonsils to descend Arnold-Chiari Syndrome type I and intramedullary cavities to develop in idiopathic syringomyelia, is a consequence of the abnormal traction of the Filum terminale ligament. This ligament is congenitally tenser than normal, affecting the entire central nervous system.

Our center offers patients the Filum System^® approach, a unique and proprietary method of diagnosing and treating these diseases, which includes minimally invasive surgical intervention to section the filum terminale with excellent results and without complications, stopping the disease development and improving the Quality of Life of patients. It is an alternative to aggressive routine procedures for these diagnoses with frequent and serious complications.

This year, the focus of International Rare Disease Day is on equity, to achieve that everyone has equal opportunities and access to care. Because rare disease patients are more likely to experience inequality, misdiagnosis, and lack of adequate services in their environment.

Our center (ICSEB) has seen patients from 85 countries on 5 continents, each country has a different healthcare system, some of which do not  have a public healthcare system.

Since 1993, ICSEB has operated on more than 2,200 patients using the Filum System^® method with excellent results and a 93% subjective satisfaction rate. Some are reimbursed by their national health systems, others are supported by foundations, including our own – the Chiari & Scoliosis & Syringomyelia Foundation – and most relying on their own funds.

On the website of the Chiari & Scoliosis & Syringomyelia Foundation you can find all the information and the opportunity to get involved in the social help of Filum patients: https://chiarifoundationbcn.com/en/donation-chiari-foundation/

#WorldRareDiseaseDay
#RareDiseases