For Patients and Medical Professionals
This section has areas to learn more about autoinflammatory diseases. It is an extensive list, so please scroll through to the bottom for all the information.
Please visit the Connect area of our site for online support group links for various conditions, and other resources for patients. There are also links in our Support area to help patients seeking help with travel costs, information about clinics that are researching autoinflammatory diseases, and much more.
A new online information and social network for CAPS and other rare diseases. There is a community for CAPS, one for FMF and also Behçets, along with other diseases.
AMWS/CINCA is French CAPS patient group - Association pour l'aide aux personnes concernes par les maladies rares Muckle et Wells syndrome et CINCA.
Japanese CAPS patient association website-all information in Japanese.
La Unidad de Enfermedades Autoinflamatorias
La Unidad de Enfermedades Autoinflamatorias se crea en el 1998 en el seno del servicio de Inmunologia del Hospital ClÃnic de Barcelona, con una clara vocacion asistencial, investigadora y de docencia en la naciente Area de las enfermedades autoinflamatorias. Information in Spanish for many autoinflammatory diseases is being added to this site.
- Eurofever Project
Information about autoinflammatory diseases in multiple languages for patients and doctors.
- CAPS Community
An informative site sponsored by Regeneron about Cryopyrin-Associated Periodic Syndromes (CAPS), There are printable pdfs about CAPS on the site, and information for patients and medical professionals.
- Canadian CAPS Network
Canadian CAPS Network patient association, affiliated with CORD (Canadian Organization for Rare Disorders).
- National Organization for Rare Disorders NORD (USA)
Excellent Index of Diseases on a multitude of rare diseases, and resource for patients and various organizations dedicated to rare disorders.
For Medical professionals
- Eurofever Project Registry of Autoinflammatory Diseases
This is a new registry-please contribute your cases to this registry so more can be learned about these rare diseases.
- Eurofever Project
Multilingual information about rheumatologic diseases, including Autoinflammatory diseases. There are printable information pages about many of these diseases to give to patients:http://www.printo.it/pediatric-rheumatology/
- Club Rheumatismes et Inflammations
A Professional Organization in France dedicated to various periodic fever syndromes, rheumatic diseases, and inflammatory disorders. Their image library of syndrome photos is very helpful, and we have a few of their photos credited and in use on our site in the NOMID/CINCA section.
- The INFEVERS registry
Heriditary Autoinflammatory Disorders, Pyogenic Disorders, granulomatous Disorders, and more.
- ISSAID-International Society of Systemic Autoinflammatory Diseases
The ISSAID society gathers resources designed specifically for autoinflammatory diseases to facilitate contacts between physicians, biologists and basic researchers dealing with these disorders.
- Paediatric Rheumatology European Society (PRES)
PRES is a European scientific society for healthcare professionals in the field of paediatric rheumatology.
- CARRA: Childhood Arthritis and Rheumatology Research Alliance
The Mission of the alliance [CARRA] is to prevent, treat and cure rheumatic diseases in children and adolescents through fostering, facilitating and conducting high quality research.
- ESID: European Society for Immunodeficiencies
- Le CeRéMAI Centre de reference des maladies auto-inflammatoires en France s
The French Center of Reference for Autoinflammatory Disease This site is a resource for French patients and medical professionals.
- Orpha.net: NOMID/CINCA
A nice summary about NOMID/CINCA syndrome, by Dr. Anne-Marie Prieur, the doctor that pioneered the research on this syndrome.
- Orpha.net: Muckle-Wells
A summary of Muckle-Wells syndrome on orpha.net.
- Orpha.net: FCAS
A summary of Familial Cold Autoinflammatory Syndrome on orpha.net.
Other Autoinflammatory Syndrome Sites