- Autoinflammatory Alliance: a wonderful resource about autoinflammatory diseases for patients and families, and the physicians that care for them.
- Autoinflammatory Diseases Clinic at Beth Israel Deaconess Medical Center : a clinic that specializes in the care of adults with known or suspected autoinflammatory diseases.
- Rheumatology Program at Boston Children’s Hospital: clinics for children with autoinflammatory diseases.
- National Institutes of Health: good information about autoinflammatory diseases.
- The International Society for Systemic Autoinflammatory Diseases: a website with resources related to autoinflammatory diseases to help facilitate contacts between interested physicians and researchers
- American College of Rheumatology: The ACR has good information for patients about a number of autoinflammatory diseases, in English and Spanish
- Enfermedades autoinflammatorias: Wonderful resource about autoinflammatory diseases for Spanish-speaking families
- Rare connect: An international website where patients with rare diseases can interact and connect with others.
- Kids get arthritis too: a website with resources for children with juvenile arthritis, from the Arthritis Foundation
- Clinical Trials: a list of open clinical trials for patients with autoinflammatory diseases, registered by the National Institutes of Health
- Arthritis Foundation: Information, practical tips and programs to help you reduce pain, get in shape and better manage your Arthritis.
I’m hoping you can recommend a physician who is well-versed in autoinflammatory diseases on the mid-east coast of the US. Specifically, CRMO and SAPHO and related diseases, and their treatment.
Try Duke (NC), Hopkins (MD), or Du Pont (DE).
Are there any physicians in Southern California who can diagnose and treat adults with Autoinflammatory Disease?
I have only been able to find a Pediatrician who will not see adults. My symptoms are extremely severe now and I desperately need to find someone who can help!
UCLA has a top program, especially dealing with patients with familial Mediterranean fever: http://gastro.ucla.edu/body.cfm?id=21
Thank you very much. I have been to the UCLA FMF Clinic, where FMF was ruled out and nothing else could be done for me. My symptoms have become very severe and traveling to seek treatment is very difficult. The specialists I have found here are pediatrics only. I will keep searching. Thank you again.
The Autoinflammatory Alliance has an excellent spreadsheet matching symptoms to each Autoinflammatory disease. It can help in researching diagnoses.