CAPS community

Here's a selection of information from patients & professionals to better understand CAPS .

NOMID resources

Disease: All NOMID FCAS Muckle Wells

CAPS Frequently Asked Questions (NOMID)

Here are some of the most frequently asked questions and their answers:

If you are a patient or carer with a question about living with CAPS, about treatments, or other relevant information please email your question to question.caps@rarediseasecommunities.org and we will put it to the specialists who have agreed to answer your questions from time to time.

See all FAQs

What is NOMID?

Neonatal-onset multisystem inflammatory disease (NOMID), also known as chronic infantile neurologic cutaneous articular (CINCA) syndrome, is a rare, congenital, systemic, inflammatory condition dis...

Read full answer

CAPS Patient Groups

These are patient organisations that have experience and expertise in CAPS . They are supporters of this website. Contact them for more information on their activities.

This is a placeholder. In editing mode, double-click me to edit.

See all Patient Groups

  • NOMID Alliance

    The NOMID Alliance is a 501 (c)(3) non-profit public charity dedicated to promoting awareness, proper diagnosis and treatment, and improved care for people with CAPS (Cryopyrin-Associated Periodic Syndromes) and other autoinflammatory syndromes.

    Contact NOMID Alliance

  • AMWS/CINCA

    French patient association providing information and support to patients and carers living with Muckle-Wells Syndrome and CINCA/NOMID.

    Contact AMWS/CINCA

  • Canadian CAPS Network

    About the Canadian CAPS Network Mission The mission of the Canadian CAPS Network (CCN) is to improve the lives of all those affected by Cryopyrin-Associated Periodic Syndromes (CAPS) and related disorders. Objectives •To improve awareness of CAPS and related disorders among the public, patients and family, clinicians, researchers, and policy makers. •To provide information and support to patients and families affected by CAPS and related disorders. •To encourage and support collaborative research into the causes and treatment of CAPS and related disorders toward improved diagnosis, treatment, and care. •To promote and support improved prevention, diagnosis, treatment and care for patients and families affected by CAPS and related disorders. •To provide a common voice for patients, families and supporters of CAPS and related disorders. •To serve as a forum for bringing together patients and families, healthcare professionals, researchers, industry, funders, and policy makers to raise funds and promote health policies that improve the lives of those affected by CAPS and related disorders.

    Contact Canadian CAPS Network

  • AIFP

    Associazione Italiana "Febbri Periodiche" Nel 2006 nasce l'AIFP, "Associazione Italiana Febbri Periodiche", che si prefigge di portare questo gruppo di malattie rare(le febbri periodiche o sindromi autoinfiammatorie), all'attenzione dei medici, attraverso la propria attività di sensibilizzazione. L'Associazione Italiana “Febbri Periodiche", è stata costituita nel 2006. Si prefigge di portare questo gruppo di malattie rare (le febbri periodiche o sindromi autoinfiammatorie), all'attenzione dei medici, attraverso la propria attività di sensibilizzazione. Tra gli scopi vi sono quelli di stabilire una rete di comunicazione e supporto tra i pazienti e le loro famiglie. Difendere i diritti civili, la dignità personale e di cittadino delle persone affette da Febbri Periodiche. Aiutare gli ammalati ad ottenere i servizi sociali di previdenza e di assistenza cui hanno diritto per legge. Curare il collegamento con le Associazioni straniere ed internazionali che hanno finalità analoghe e con tutte le Associazioni che si occupano di malattie che hanno sintomi o danni similari, per scambiare con esse informazioni utili relative alle attività svolte sia mediche che sociali ed adoperarsi per l'applicazione delle leggi esistenti e per la proposizione di nuove leggi più rispondenti alle esigenze dei malati affetti da queste patologie.

    Contact AIFP

See all Patient Groups

CAPS Documents

Resources, documents and detailed informations on CAPS . In this section you can download brochures, ask for printed documents or find useful links.

See all Documents

CAPS Articles

Most recent articles:

See all Articles

Research summary: Detection of Base Substitution-Type Somatic Mosaicism of the NLRP3 Gene with >99.9% Statistical Confidence by Massively Parallel Sequencing

Article summary:

Genetic testing for the heterozygous germline missense mutations in the NLRP3 coding region gene mutation that can cause Cryopyrin-Associated Perioidic Syndromes (CAPS) has bee...

Read

Research summary: Cryopyrin-Associated Periodic Syndrome: An Update on Diagnosis and Treatment Response

Summary:

This is an excellent article for anyone interested in learning more about Cryopyrin-Associated Periodic Syndromes (CAPS) and about the recommended diagnostic procedures. In addition, t...

Read

Muckle-Wells Syndrome

Symptoms

Common symptoms of MWS include recurrent rashes beginning in infancy or early childhood, intermittent fevers, joint pain (usually with no apparent changes in tissue and cartilage), rec...

Read

Familial Cold Autoinflammatory Syndrome

Symptoms

Patients with FCAS experience mild to debilitating symptoms such as rash, fatigue, recurrent fever and chills, recurrent joint pain, and recurrent conjunctivitis (inflammation of the o...

Read

Neonatal-onset Multisystem Inflammatory Disease

Symptoms

In addition to fever, symptoms of NOMID involve the skin, CNS and joints. Skin rashes occur in all patients within the first six weeks of life and persist throughout their lives. CNS s...

Read

CAPS Events

Most recent events:

See all Events

  • May 2012

  • 6th European Conference on Rare Diseases & Orphan Products (ECRD 2012)

    From 23 to 25 May 2012

    MCE Conference Centre in Brussels, Belgium

    More info

  • June 2012

  • Canadian CAPS Conference

    On 2 June 2012

    Toronto, Ontario Save the date: http://raredisorders.ca/documents/SAVETHEDATEnoticeJune2Conference.pdf

    More info

  • European Human Genetics Conference 2012

    From 23 to 26 June 2012

    Its aims are to promote research in basic and applied human and medical genetics, to ensure high standards in clinical practice and to facilitate contacts between all persons who share these aims, particularly those working in Europe. The Society will encourage and seek to integrate research and its translation into clinical benefits and professional and public education in all areas of human genetics.

    More info

  • November 2012

  • 62nd Annual Meeting of the American Society of Human Genetics (ASHG)

    From 6 to 9 November 2012

    "We have 24 invited slots available and anticipate receiving over 120 proposals. We encourage you to provide as much information as possible in order to assist the Program Committee in their decision making. The ASHG 2012 Program Committee encourages the submission of debate or panel style sessions on thought-provoking or controversial topics."

    More info

CAPS community news

  • -

    Cryopyrin-associated periodic syndromes: otolaryngologic and audiologic manifestations.
    News, published 2 months ago

    show transcript


    Cryopyrin-associated periodic syndromes (CAPS) represent a spectrum of CIAS1 gene-mediated autoinflammatory diseases characterized by recurrent systemic inflammation. The clinical spectrum of CAPS varies from mild to severe and includes the syndromes historically described as familial cold autoinflammatory syndrome (FCAS), Muckle-Wells syndrome (MWS), and neonatal-onset multisystem inflammatory disease (NOMID). This article presents the largest cohort of patients with CAPS. The objective is to describe the pathogenesis, otolaryngologic, and audiologic manifestations of CAPS.

  • -

    Drug halts organ damage in inflammatory genetic disorder
    News, published 3 months ago

    show transcript


    NIH study shows benefits of long-term Kineret therapy in people with NOMID

  • -

    Cuts in Ireland drastically impacting young man with CINCA's future
    News, published 8 months ago

    show transcript


    Aisling McNiffe's voice crackles when she talks about her son's school prospects. Jack, a chirpy, fair-haired six-year old with a fondness for Toy Story movies, is the only person in the world known to have both Down's Syndrome and CINCA Syndrome, a degenerative disease that causes crippling headaches, severe arthritis, skin rashes, deafness and blindness.

  • -

    Clinical Outcomes and Safety: A Registry Study of Ilaris (Canakinumab) Patients
    News, published 10 months ago

    show transcript


    The purpose of this observational study is to collect additional information regarding long-term safety and effectiveness of Ilaris in the treatment of CAPS patients in clinical practice.

  • -

    Anakinra to Treat Patients With Neonatal Onset Multisystem Inflammatory Disease
    News, published 12 months ago

    show transcript


    This study will evaluate the safety and effectiveness of anakinra (Kineret(Registered Trademark)) for treating patients with neonatal onset multisystem inflammatory disease (NOMID), also known as chronic infantile neurological, cutaneous and arthropathy (CINCA) syndrome.

  • -

    From the Australian Prescriber: New drugs Canukinumab
    News, published about 1 year ago

    show transcript


    Canakinumab

    Some of the views expressed in the following notes on newly approved products should be regarded as tentative, as there may have been limited published data and little experience in Australia of their safety or efficacy. However, the Editorial Executive Committee believes that comments made in good faith at an early stage may still be of value. As a result of fuller experience, initial comments may need to be modified. The Committee is prepared to do this. Before new drugs are prescribed, the Committee believes it is important that full information is obtained either from the manufacturer's approved product information, a drug information centre or some other appropriate source.

    (Aust Prescr 2011;34:55-9)

    Ilaris (Novartis)
    vials containing 150 mg lyophilised powder for reconstitution
    Approved indication: cryopyrin-associated periodic syndromes
    Australian Medicines Handbook section 15.2.2

  • -

    Más calidad de vida con biológicos en niños con patologías autoinflamatorias
    News, published about 1 year ago

    show transcript


    En el segundo gran grupo, el del síndrome de la fiebre persistente, no mantienen estos episodios tan marcados. Aquí se ubica el síndrome de CAPS o criopirinopatías. Las criopirinas son las proteínas que ponen en marcha el mecanismo inflamatorio.

  • -

    “Studies of the Natural History, Pathogenesis, and Outcome of Autoinflammatory Diseases (NOMID/CAPS, DIRA, CRMO, Still's Disease, Behcet's Disease, and Other Undifferentiated Autoinflammatory Diseases)”
    News, published about 1 year ago

    show transcript


    Overall Status: Recruiting

    This study will examine and test patients with neonatal onset multi-system inflammatory disease (NOMID) to learn more about the cause and course of the disease. It will study the disease signs and symptoms and the possible role of a gene called CIAS1, and it will develop a database to gather information on patients with NOMID in the United States and around the world. It will also serve as a screening protocol to offer eligible patients participation in a treatment protocol, if an appropriate one is available.

  • -

    NOMID in the news in Canada
    News, published about 1 year ago

    show transcript


    Such is the case for seven-year-old Brampton resident Michael Spiridakis, who suffers from neonatal onset multisystem inflammatory disease (NOMID), a genetic disorder that causes uncontrolled inflammation in multiple parts of the body.

  • -

    Wood River teen pushes recognition of rare diseases
    News, published about 1 year ago

    show transcript


    Radney, 16, has a particular interest in the subject of rare diseases because almost four years ago she discovered she has Neonatal Onset Multisystem Inflammatory Disease, also called NOMID.....

See all news