On 30 September 2026, representatives of the Chiari & Scoliosis & Syringomyelia Foundation (CSSf) welcomed members of the new Board of Directors of the Associazione Internazionale Sindrome Arnold Chiari, Siringomielia e Scoliosi (AISACSISCO OdV) to Barcelona. The two organisations have been collaborating since 2009.
The meeting took place at Casa ICSEB and provided an opportunity to renew the ties between the two organisations and continue working towards shared goals related to information, guidance and support for patients with Arnold-Chiari syndrome, syringomyelia, scoliosis and other conditions related to Filum Disease.
AISACSISCO OdV: Support for patients with Chiari, syringomyelia and scoliosis
AISACSISCO OdV is an association of patients and family members founded by a group of patients who had undergone treatment using the Filum System®, in recognition of the work of Dr M. B. Royo Salvador, neurosurgeon and developer of this method.
Since its foundation, one of the association’s main objectives has been to provide guidance and information to other patients facing difficulties that may arise during the diagnostic and treatment process for conditions such as Arnold-Chiari syndrome, idiopathic syringomyelia and idiopathic scoliosis, as well as other conditions related to Filum Disease.
Collaboration between patients, associations and healthcare professionals can help facilitate access to specialised information and provide support throughout the different stages of the care process.
Agreement between ICSEB and AISACSISCO OdV
Since 2019, the Institut Chiari & Siringomielia & Escoliosis de Barcelona (ICSEB) and AISACSISCO OdV have had a collaboration agreement in place.
This agreement gives members of the association access to various benefits related to the services and care available to patients treated using the Filum System®.
The collaboration also facilitates communication with international patients, particularly through ICSEB’s Italian- and French-speaking departments, as these are the languages the association uses to communicate with and support its members.
Shared objectives of CSSf, ICSEB and AISACSISCO
During the meeting, Dr M. B. Royo-Salvador, President of CSSf, and Mr P. Aimè, President and Treasurer of AISACSISCO OdV, renewed their commitment to continuing to work together towards shared and complementary objectives:
- Raising awareness and providing information about diagnoses related to Filum Disease and their treatment.
- Promoting guidance and facilitating access to support for association members throughout their information-seeking and care journey.
- Continuing to strengthen collaboration between patients, associations and healthcare professionals.
The other members of the AISACSISCO OdV Board of Directors — Ms S. Salafia and Ms B. Magario, and Mr G. Ledda — also shared their experiences as patients treated using the Filum System®.
Reflecting on their long-standing commitment to volunteering and supporting other patients, they reaffirmed their willingness to continue providing information, listening to and supporting people with diagnoses related to Filum Disease, as well as their families.
A meeting dedicated to continuing patient support
This meeting between CSSf, ICSEB and AISACSISCO OdV represents another opportunity to strengthen a collaboration built over many years and centred on the patient.
ICSEB and CSSf would like to express their gratitude to all the volunteers who, over so many years, have dedicated their time to informing, listening to and supporting patients with Arnold-Chiari syndrome, syringomyelia, scoliosis and other conditions related to Filum Disease.
Thanks to these efforts, many patients have been able to find information, clarify questions about their care journey and, in some cases, travel to Barcelona to be assessed and treated by the ICSEB team.
We extend our recognition and heartfelt thanks to all members of AISACSISCO OdV for their commitment and the work they continue to carry out in support of patients and their families.
Thank you all so much!
Photo 1. From left to right: Ms M. Guerrero, Secretary of CSSf; Ms B. Magario, Board Member of AISACSISCO; Mr P. Aimè, President and Treasurer of AISACSISCO; Dr M. B. Royo Salvador, President of CSSf; Ms S. Salafia, Board Member of AISACSISCO; Mr G. Ledda, member of AISACSISCO; Ms G. Luè, Patient Care at ICSEB; and Ms M. Espino, Trustee of CSSf
Photo 2. The CSSf–ICSEB–AISACSISCO OdV working group following the meeting, in front of Casa ICSEB.