Chiari & Scoliosis & Syringomyelia Fundació Privada

About the foundation

Chiari & Scoliosis & Syringomyelia Fundació Privada is a nonprofit organization based in Barcelona that focuses on Filum Disease and three conditions it associates with it: Arnold Chiari I syndrome, idiopathic scoliosis, and idiopathic syringomyelia. The foundation maintains that these conditions share symptoms and may be expressions of the same disease.

Areas of work

• Patient assistance: support for people affected by Filum Disease so they can receive appropriate treatment and improve their quality of life.
• Research: support for projects and ideas that expand scientific understanding of the disease.
• Education: training for specialists interested in these conditions and public communication of research findings.

Activity and figures

According to figures published by the foundation, it has been active for 16 years, has helped 100 patients from 25 countries, supports 16 research projects, has organized 12 meetings and events, and has published nine books.

Recent activity

The board held its annual meeting at the foundation’s headquarters on May 31, 2023, approving the 2022 financial statements and reviewing the year’s activities. In April of that year, the foundation hosted a discussion at the ICSEB building in Barcelona with Dr. Sergi Massanet, an orthopedic surgeon specializing in regenerative medicine, about using platelet-rich plasma (PRP) for lower back and joint pain.

Funding and ways to help

The foundation is funded through donations and grants. Ways to support its work include donations, volunteering, personal projects, and charitable gifts.

Contact

Headquarters: 32 Passeig Manuel Girona, 08034 Barcelona, Spain. Phone: +34 932 066 406. Fax: +34 932 066 403. Email: cssf@chiarifoundationbcn.com.