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Increasing Awareness, Care and Treatment for CAPS
and other autoinflammatory diseases.
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Sites For CAPS Patients to Connect
We also have many other links for other autoinflammatory diseases below to help you to find support form other patients in your country, or around the world with your condition. Please contact us if you have a suggested link to add to our list. Thank you!
Familial Mediterranean Fever (FMF) Patient Support
Online Support for Other Autoinflammatory Diseases
  • Autoinflammatory Diseases-Rare But Not Alone! Facebook support group
    This is a group for patients, friends and family members that are dealing with all kinds of autoinflammatory diseases, such as CAPS,TRAPS, FMF, HIDS, DIRA, CRMO, Blau, PFAPA, Stills, Schnitzler's Syndrome, Behçets, CANDLE syndrome, other autoinflammatory diseases, and also the undiagnosed. This is a closed group, so only members can see postings.
  • Periodic Fevers facebook support group
    This is a place for those parents whose children are fighting periodic fevers. Such as FMF, PFAPA, HIDS and TRAPS. A place to share photos and just follow the stories of other children in the same predicament.
  • PFAPA Yahoo support group
    PFAPA online support and chat group.
  • RareConnect Behçets Syndrome Community
    An site sponsored by NORD and EURORDIS, along with Behçets organizations from around the world to educate and connect patients with this rare disease.
  • TRAPS-HIDS-GeneticFeverSyndromeSupportGroup
    An online group for families and patients with TRAPS, HIDS or other autoinflammatory diseases
  • Rare Share
    RareShare is a unique social hub building communities for patients, families, and healthcare professionals affected by rare disorders. There are communities for FCAS, MWS and NOMID on this site, and also TRAPS, Behçets, Blau, Schnitzler Syndrome, and many more rare diseases.
  • American Behçets Disease Association ABDA Message Boards
    ABDA Message Boards for patients
  • Sindrome Periodica Associata al Recettore TNF
    Sindrome periodica associata al recettore TNF-Tumor Necrosis Factor Receptor 1 (o Febbre Iberniana Familiare)
  • Inspire
    Join groups about health topics important to you, make friends who share your health interests, and control what you share with extensive privacy settings. There are some groups for The Children's Inn, TRAPS, HIDS, FMF, PFAPA, and NOMID
Other Helpful Sites and Organizations
  • 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.
  • European Organisation for Rare Diseases (EUORDIS)
    The European Organisation for Rare Diseases, EURORDIS, is a patient-driven alliance of patient organizations and individuals active in the field of rare diseases.
  • Canadian Organization for Rare Disorders (CORD)
    Canadian organization dedicated to rare disorders.
  • Genetic Alliance
    Genetic Alliance is a nonprofit health advocacy organization committed to transforming health through genetics and promoting an environment of openness centered on the health of individuals, families, and communities. Genetic Alliance's network includes more than 1,000 disease-specific advocacy organizations, as well as thousands of universities, private companies, government agencies, and public policy organizations. The network is a dynamic and growing open space for shared resources, creative tools, and innovative programs.
  • Care Pages
    CarePages websites are free patient blogs that connect friends and family during a health challenge.
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