Find a Rheumatologist This is the American College of Rheumatology (ACR) Geographic Membership Directory that you can use to search for Adult or Pediatric Rheumatologists (in the US, or abroad), or other health Professionals that are members of the ACR. Search by specialty, and by city, state and/or country.
Diagnostic Score for Periodic Fever First make sure to download the questionnaire form with the hyperlink in the top paragraph on this link, then do this diagnostic tool. (note apthosis is mouth sores, thoracic pain is pain in the chest).
Autoinflammatory Symptoms Chart This is a comparative chart of autoinflammatory diseases (expanded version is coming soon) to print out, and use to discuss these diseases with your doctor. This was co-authored and edited by leading experts on these diseases that also helped with our CAPS guidebook.
NIH Patient Services Looking for the NIH airport or campus shuttle schedule? This is the link for you. This link also has information about Patient Travel Services, Lodging, Visitor Map of the NIH and other helpful information about coming to the NIH. The sidebar index on the left also includes information about dining at the NIH, parking, travel, interpreter services, banking and much more.
NIH Visitor Information This site has a lot of information about the National Institutes of Health (NIH) in Bethesda, MD.
NIH NIAID Translational Autoinflammatory Disease Studies Unit The Translational Autoinflammatory Disease Studies research focus is on applying a systematic approach to the clinical and immunological description of a number of autoinflammatory diseases. This is the leading research institution for autoinflammatory diseases in the US. Raphaela T. Goldbach-Mansky, M.D., M.H.S. is the
Acting Chief. The lab uses targeted interventions to understand the role of specific inflammatory pathways in the pathogenesis of the autoinflammatory diseases. The Translational Autoinflammatory Disease Section works in partnership with other NIH institutes, including the NHGRI, NIAID and NIAMS.. This collaboration has led to the discovery and characterization of genes underlying a number of other autoinflammatory conditions.
NIH Undiagnosed Diseases Program (UDP) Some patients wait years for a definitive diagnosis. Using a unique combination of scientific and medical expertise and resources at the National Institutes of Health (NIH), the Undiagnosed Diseases Program (UDP) pursues two goals: To provide answers to patients with mysterious conditions that have long eluded diagnosis To advance medical knowledge about rare and common diseases. For more information please call (866) 444-8806
The Childrens Inn at the NIH The Children's Inn is "A Place Like Home" for children and families that come to the National Institutes of Health (NIH) for care and treatment. Patients enrolled in pediatric protocols at the National Institutes of Health who are 25-years-old or younger and their families are eligible to stay at The Children’s Inn. You must be well, with no infectious diseases or you cannot stay at the Inn. There is no charge to families and patients for lodging. You need to bring, or buy your own food to cook at the Inn. There are shuttles 4 times a week to the grocery store, and some canned foods to use, if needed if you cannot get to the store. Call 1-800-644-4660 if you need assistance with your stay at the Inn. The Children’s Inn shuttle on the NIH campus runs Monday through Friday from 7 a.m. to 11:49 p.m. On weekends, the shuttle is available from 7 a.m. to 5:00 p.m.
Search for Genetic Testing Centers Worldwide By providing current, authoritative information on genetic testing and its use in diagnosis, management, and genetic counseling, GeneTests promotes the appropriate use of genetic services in patient care and personal decision making.Search tips: If you know the genetic mutation name, put that into the search area labeled "Gene Symbol" (an example would be to search NLRP3 if you were looking for a gene test for CAPS.) You can also search by disease name, and some acronyms for diseases such as FMF will lead to the available labs.
Genedx.com Periodic Fever Syndromes Panell This US lab can do testing for many (but not all) autoinflammatory diseases. Use the Gene Tests link above to search for other diseases that this panel does not cover (such as for CANDLE, Blau and a few others) This is the list of diseases currently available for testing on this genedx panel: Cryopyrin Associated Periodic Syndromes (CAPS-includes FCAS, MWS and NOMID/CINCA, Cyclic Neutropenia, TNF Receptor-Associated Periodic Syndrome (TRAPS), Hyper-IgD Syndrome (HIDS-aka MVK), Familial Mediterranean Fever (FMF), Majeed Syndrome, Pyogenic Sterile Arthritis, Pyoderma Gangrenosum, and Acne Syndrome (PAPA)
Search clinicaltrials.gov Searching for clinical trials that are going on in the US, and around the world for your disease is easy on this site. For the broadest search, just list the disease of interest.
FDA Med Watch MedWatch is the Food and Drug Administration's (FDA) program for reporting serious reactions, product quality problems, therapeutic inequivalence/failure, and product use errors with human medical products, including drugs, biologic products, medical devices, dietary supplements, infant formula, and cosmetics. If you think you or someone in your family has experienced a serious reaction to a medical product, you are encouraged to take the reporting form to your doctor. Your health care provider can provide clinical information based on your medical record that can help FDA evaluate your report. Call FDA at 1-800-FDA-1088 to report by telephone
National Patient Travel
This helpline provides information about all forms of charitable, long-distance medical air transportation and provides referrals to all appropriate sources of help available in the national charitable medical air transportation network.
Patient Advocate FoundationThis organization can help advocate for patients that are having challenges with their insurance coverage for medications, or other issues.
My Family Health Portrait -A free, online way to manage and evaluate your family health history. This can be helpful for patients that are trying to record, or analyze their family health symptoms or conditions
Caring Bridge is an online space where you can connect, share news, and receive support. CaringBridge Sites are your own personal, protected sites make it easy to stay connected during any type of health event. Family and friends can visit the site to stay informed and leave supportive messages It is available 24/7 to anyone, anywhere, at no cost. The Support Planner is a calendar that helps family and friends coordinate care and organize helpful tasks, like bringing a meal, offering rides, taking care of pets and other needs.
websites are free patient blogs that connect friends and family during a health challenge.
Rare Connect This is a joint effort from NORD and EURORDIS to have patient communities for rare diseases. There are a few communities that are for autoinflammmatory diseases, including: CAPS, Familial Mediterranean Fever (FMF), and Behçets, with more rare disease communities being added all the time.
Rare Diseases Day is an annual, awareness-raising event coordinated by EURORDIS at international level and National Alliances at national level.
EURORDIS: Rare Diseases Europe- EURORDIS is a non-governmental patient-driven alliance of patient organisations representing 561 rare disease patient organisations in 51 countries covering over 4000 diseases