e-mail me
Internet Links
Lots of these sites have truly helped further awareness and the sharing of information worldwide. Please e-mail me at site_manager@nomidalliance.net if you have a website, chat group, or any link of interest to the NOMID Alliance. Thank you very much.

Upcoming Events or Conferences


CAPS & NOMID/CINCA Sites, and Other Autoinflammatory Sites
  • The NOMID Alliance is on Facebook! Become a fan.
    Please come find us on Facebook and become a fan for updates.
  • Cryopyrin-Associated Periodic Syndromes on Facebook
    Look for Cryopyrin-Associated Periodic Syndromes (CAPS): NOMID/CINCA, MWS, FCAS on Facebook.
  • NOMID Syndrome Yahoo Group
    The Yahoo chat group/online gathering place for families, friends and people with NOMID/CINCA (and sometimes a few other related syndromes). This group is moderated by Kate Barton.
  • Cold Urticaria Info Island, the Online Support Group for FCAS, and other Cold Urticaria syndromes
    This is an online support group for patients with FCAS, MWS, NOMID/CINCA and also Cold Urticaria.
  • AMWS/CINCA- A French CAPS patient group
    AMWS/CINCA -Association pour l'aide aux personnes concernées par les maladies rares Muckle et Wells syndrome et CINCA
  • CAPS Connect USA online patient community
    This is a new online community for patients with CAPS that live in the USA, but there is hope that the site will expand to allow patients from other countries to join at a later date.
  • Follow us on twitter

    Twitter Updates

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    • Excellent Patient Backgrounder pdf and CAPS photos
      New CAPS patient backgrounder download and excellent photos of many symptoms seen in CAPS is at this link, and well worth viewing.
    • Orpha.net: NOMID/CINCA
      A nice summary about NOMID/CINCA syndrome, by Dr. Anne-Marie Prieur, the doctor that pioneered the reasearch on this syndrome.
    • Feb. 8, 2005 Powerpoint from the NIH series Demystifying Medicine:
      This is a very detailed medical presentation by Dr. Raphaela Goldbach-Mansky, and includes the findings of the Anakinra study for NOMID patients.
    • Demystifying Medicine Course Materials
      Scroll down to February 8, 2005 in this link to see all the materials from the NIH medical lecture Series, Demystifying Medicine:"Fevers, Genes, and History: Adventures in the Genomics of Inflammation". There are also video clips in this material, along with powerpoint slide shows. There are presentations on various periodic fevers, including FMF, NOMID/CINCA, FCAS, MWS, and others. These are geared for medical professionals.
    • Club Rheumatismes et Inflammations
      A Professional Organization in France dedicated to various periodic fever syndromes, rheumatic diseases, and inflammatory disorders. Dr. Anne-Marie Prieur is featured as a part of the Cryopyrin related disorders section. This link shows their photos of various syndromes, including NOMID/CINCA. Note: Some of the images are of very severe cases, and could be disturbing to some, but it is helpful to see these images to know the extent of the syndrome.
    • INFEVERS Genetics Database
      The registry of Familial Mediterranean Fever (FMF) and Hereditary Autoinflammatory Disorders Mutations
    • 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. It provides support to share and rapidly disseminate information, thoughts, feelings and experiences to improve the quality of life of patients affected by autoinflammatory diseases and promote advances in the search for the causes and cure. Information on past and forthcoming meetings and a number of new applications (e.g. a centralized list of existing mutation and patient registries, image libraries, quality control schemes for molecular diagnosis…) are made available through its portal website.
    • NOMID Home Page
      Parents and patients with NOMID/CINCA might be especially interested in nomidsyndrome.com, a great family support website, organized by John and Kate Barton.


    Muckle-Wells Syndrome


    Familial Cold Autoinflammatory Syndrome


    Rare Diseases Resources
    • National Organization for Rare Disorders NORD
      Excellent Index of Diseases on a multitude of rare diseases, and resource for patients and various organizations dedicated to rare disorders. This is based in the USA.
    • European Organisation for Rare Diseases EUORDIS
      The European Organisation for Rare Diseases, EURORDIS, is a patient-driven alliance of patient organisations and individuals active in the field of rare diseases. Eurordis’ mission is to build a strong pan-European community of patient organisations and people living with rare diseases, to be their voice at the European level, and - directly or indirectly - to fight against the impact of rare diseases on their lives.
    • Canadian Organization for Rare Disorders (CORD)
      Canadian organization dedicated to rare disorders.
    • Rare Diseases Day
      Rare Disease is open to the general public, patient organisations, NGOs and the rare disease community at large. Rare Disease Day is an annual, awareness-raising event co-ordinated by EURORDIS at international level and National Alliances at national level.


    Clinical Trials-please go to our Clinical Trials page


    Conferences about CAPS syndromes and other Periodic Fever Syndromes


    Other Periodic Fever Sites and Resources
    • FMF Community
      A wonderful site about many periodic fever diseases, including Familial Mediterranean Fever, FCAS, Muckle-Wells, NOMID, and many others.
    • Hyper-IgD & Periodic Fever Syndrome (HIDS)
      A good site dealing with HIDS, and has a link to the HIDS patients platform.
    • Amyloidosis
      Amyloidosis is the result of a buildup of amyloid deposits in the body, that can damage the kidneys, liver and other organs over time. People with NOMID and Muckle-Wells are at risk for this, if they are left untreated for many years. This can happen in many other inflammatory diseases as well. This site has a lot of great information.
    • PFAPA Yahoo support group
      PFAPA online support and chat group. This is moderated and organized by Fran Bulone.


    Genetics, Databases, etc.
    • Infevers Database of Genetic Mutations
      This is a great link for those wanting to search out mutations. Click on this link, then click "agree" and search under CAPS on "entire database" to see all the confirmed genetic mutations reported for NOMID/CINCA, MWS, and FCAS. Also gentics for TRAPS, HIDS, PAPA, and others.
    • Genetic Alliance
      This site helped me to learn about starting a non-profit, and I have learned so much from them! Please take a look. You can also become a member for free.


    Other Helpful Sites
    • Printo.it
      This is a great site with many links and information about various rare syndromes.
    • 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.
    • Pub-Med
      Free, online Pub-med link to search research abstracts, and much more. This is a very helpful site, but is a physician-based site, so the language is full of medical terms.
    • PatientTravel.org
      PatientTravel.org is dedicated to helping assist patients in obtaining charitable long-distance medical air transportation or compassionate travel. They will help families needing to travel long distances fly to the medical facility that will care for the patient's needs. Plase take a look if you are seeking help for air travel to a medical center for your health condition.
    • ESID: European Society for Immunodeficiencies


    New FDA Approved drug for CAPS syndromes-Ilaris (Canakinumab) made by Novartis


    Regeneron sites (the makers of ARCALYST).
    • Regeneron: The makers of ARCALYST
      Arcalyst (Rilonacept)is the ONLY drug currently available that is FDA approved and available now for the treatment of some forms of CAPS (Cryopyrin Associated Periodic Syndrome), such as FCAS and MWS. Their website has more information on this new and promising treatment option, and there is also the ARC program for patient medication assistance. Contact Regeneron's ARC program at: 1-877-734-6777 (1-877-REGN 777).


    Anakinra (Kineret)


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