1) AOU Città della Salute e della Scienza di Torino
Website for hospitals of AOU Città della Salute e della Scienza di Torino. Here you can find useful info about activities and services offered by the various structures. You can also find updated info about initiatives, conventions and various meetings.
2) Piemonte and Valle d’Aosta Interregional Network for Rare Diseases
Istitutional website of Piemonte and Valle d’Aosta Interregional Network for Rare Diseases. Here you can find useful info about the network, laws and rights for patients affected by rare diseases.
3) National Institute of Health
The website of the National Center for Rare Diseases, Institute of Health. Useful info and documents are available.
Orphanet is the reference portal for information on rare diseases and orphan drugs, for all audiences.
You can find useful information about rare diseases and International Expertise Centers, such as Interregional Center of Expertise for Syringomyelia and Chiari Malformation.
Website of the Italian Association of patients affected by Chiari Malformation, Syringomyelia and related disorders
Website of the Italian Association of children affected by Chiari Malformation
Website of Uniamo, Italian Federation for Rare Diseases onlus.
Website of the French Association of patients affected by Syringomyelia - "ASSOCIATION POUR AIDER ET INFORMER LES SYRINGOMYELIQUES EUROPEENS REUNIS" - APAISER.
9) ANN CONROY TRUST
Website of the UK Association of patients affected by Chiari Malformation, Syringomyelia and related disorders
Website of the Spanish Association of patients affected by Chiari Malformation - "Federación Española de Malformación de Chiari y Patologías Asociadas" - FEMACPA.
Northern Ireland Website of the Association for patients affected by Syringomyelia - Syringomyelia and Arnold-Chiari Association" - SACA.
12) CONQUER CHIARI
Website of C&S Patient Education Foundation, non-profit organization dedicated to improving the experiences and outcomes of Chiari Malformation and Syringomyelia patients through education, awareness, and research.
13) CSF Chiari & Syringomyelia Foundation
Website of Chiari & Syringomyelia Foundation, organization built on leadership, vision and commitment to find a cure for Chiari Malformation, Syringomyelia and related disorders.