Today, 28 February 2019, the 12th edition of Rare Disease Day is celebrated worldwide. This year’s theme revolves around “bridging health and social care”.
· Supports the Chiari & Scoliosis & Syringomyelia Foundation, which promotes the development of scientific research projects;
· Bears the logo of the Institut Chiari & Siringomielia & Escoliosis de Barcelona (ICSEB), as its members are patients who underwent the sectioning of the Filum Terminale according to the Filum System® health method. This protocolized method has been designed for the diagnosis, treatment and care of patients with conditions that are considered to be rare, mainly the Arnold-Chiari Syndrome Type I, Idiopathic Syringomyelia and all cranio-occipital malformations and related conditions included in the etiological concept of the Filum Disease. According to the research of the ICSEB’s Director, Dr. M. B. Royo-Salvador, the Filum Disease is the root cause of each one of these manifestations;
· Offers a point of reference for patients and their families through dialogue, by sharing members’ personal experiences and points of view via social networks and meetings. The purpose is to alleviate the loneliness of those looking for information, desperate after receiving diagnosis and treatment options that can be devastating both physically and psychologically;
· Helps to find information on the rights of all EU citizens to access cross border quality healthcare.
The spirit of this year’s Rare Disease Day calls on this same social-health care focus. It aims at promoting collaboration and interconnection between medical and social services, in order to build networks, programmes and projects to better assist “rare” patients and their families. A better understanding of the disease in all its aspects and a greater presence in the territory of residence can provide patients with solutions that help manage their condition and possibly improve it.
The Institut Chiari and the AI.SAC.SI.SCO Onlus International Association join forces to improve the quality of life of patients and announce the recent signing of a collaboration agreement. The Association membership allows access to special conditions in the services provided by the Institute to its patients.
For more information: https://institutchiaribcn.com/en/agreements-and-advantages/
Both the ICSEB and AI.SAC.SI.SCO wish that this initiative can contribute to a better future for Filum Disease patients and hope that their “rare” condition will find understanding and support among social, medical and research professionals.
Celebrate Rare Disease Day with us!
Contact AI.SAC.SI.SCO Onlus: http://aisacsisco.eu/index.php/contact
Preferred contact languages: French and Italian.
Other languages: English (only via email)
