Behçet’s Syndrome community

Here's a selection of information from patients & professionals to better understand Behçet’s Syndrome .

Behçet’s Syndrome resources

Behçet’s Syndrome Frequently Asked Questions

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

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What is Behçet disease?

Behçet disease is an inflammatory condition that affects many parts of the body. The health problems associated with Behçet disease result from widespread inflammation of blood vessels (vasculitis)...

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How common is Behçet disease?

Behçet disease is most common in Mediterranean countries, the Middle East, Japan, and other parts of Asia. However, it has been found in populations worldwide.

The highest prevalence of Behçet d...

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Behçet’s Syndrome Patient Groups

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

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  • SIMBA Italy

    Associazione Italiana Sindrome e Malattia di Behçet L'attività primaria di Simba Onlus è l' informazione e la diffusione della conoscenza inerente la malattia di Behcet, unitamente al sostegno ed alla difesa dei diritti dei pazienti e dei loro familiari attuata sia tramite i propri canali internet sia capillarmente attraverso i propri referenti regionali. Simba Onlus collabora a tal fine con tutti i centri di riferimento italiani, battendosi per ottenere una uniformità di trattamento ed una continuità terapeutica su tutto il territorio nazionale,incentivando la creazione di centri di riferimento nelle regioni che ne sono sprovviste e promuovendo la ricerca in campo medico,genetico e farmacologico. Simba Onlus lavora in sinergia con l' Istituto Superiore di Sanità presso cui è associazione accreditata, con la Consulta Nazionale delle malattie rare e localmente ,ove esistenti, prendendo parte ai tavoli di lavoro regionali dedicati alle malattie rare.

    Contact SIMBA Italy
  • Ass. Française de Behçet

    L'Association Françaises de la Maladie de BEHCET, régie par la loi de 1901, à été créée par des malades afin de faire connaître et reconnaître la Maladie de Behçet par le corps médical et les administrations concernées. Afin aussi de sensibiliser l'opinion publique et de mobiliser la recherche. De soutenir informer et orienter les malades, ou médecins permettant ainsi de faciliter le diagnostic pas toujours évidents à établir. Aider et encourager la recherche, en créant des bourses pour la recherche médicale.

    Contact Ass. Française de Behçet
  • As. Española de Behçet

    NUESTROS OBJETIVOS -Promover la agrupación de todos los pacientes, familiares, profesionales e interesados para poder trabajar de forma coordinada en las posibles soluciones y facilitar el reconocimiento de la enfermedad. -Sensibilizar a la opinión pública de los problemas de identificación, diagnóstico y tratamiento de la Enfermedad de Behçet. -Facilitar la información sobre la enfermedad a los pacientes, familiares y profesionales con el objetivo de conocer mejor sus causas, sus manifestaciones y sus tratamientos, con especial énfasis en la correcta utilización del tratamiento farmacológico. -Potenciar todos los canales de información para los asociados con la finalidad de propiciar apoyo social, familiar, laboral, psicológico, médico y facilitar los canales de actuación en los casos graves. -Estimular y promover la investigación de la enfermedad de Behçet tanto a nivel nacional e internacional. -Cooperar con todas las identidades nacionales e internacionales que tengan una finalidad similar para conseguir la mejora de la calidad de vida de los enfermos y una futura curación.

    Contact As. Española de Behçet
  • UK Behçet’s Syndrome Society

    The Behçet’s Syndrome Society was formed in 1983 by Judith Buckle (1950-1997). Its main aims are: • To provide information and support for people with Behçet’s disease and for those who care for them. • To provide financial aid in hardship caused by Behçet’s disease. • To foster education, collaboration and networking in the medical and allied professions with an interest in Behçet’s disease. • To promote and assist with research into Behçet’s disease. • To promote the formation of patient support groups and awareness of this rare disease amongst the appropriate influential institutions, authorities and decision-making bodies, and to provide them with detailed information about Behçet’s disease.

    Contact UK Behçet’s Syndrome Society
  • American Behcet's Disease Assoc.

    The American Behcet's Disease Association's mission is to provide support and information to people with Behcet's Disease and their families and to educate the medical community about Behcet's Disease. Through education, support, research and fundraising, the ABDA is working to find a cure and promote awareness and understanding of Behcet's Disease.

    Contact American Behcet's Disease Assoc.

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Behçet’s Syndrome Documents

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

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Behçet’s Syndrome Articles

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Manifestations of Behçet's disease

Hypopyon iritis is among the most serious manifestations of ocular lesions in Behcet's disease. In reality it is not frequent and it is often difficult to reveal because it is hidden.
 
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Tags: Living with Behcet's

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LA ENFERMEDAD DE BEHÇET (ES)

Características

La enfermedad de Behcet se caracteriza por la inflamación de los vasos sanguíneos por lo que entra dentro del grupo de las vasculítis. A su vez se tr...

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Maladie de Behçet: trois nouveaux loci identifiés (FR)

La maladie de Behçet (MB) est une maladie inflammatoire systémique qui se manifeste essentiellement chez des adultes jeunes par des signes muco-cutanés, des manifestations syst...

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Orphanet article: Behçet's disease (2006)

Behçet's disease (BD) is a systemic inflammatory disease of unknown origin. It mainly occurs in young adults, who present with muco-cutaneous signs, such as oral or genital aphthae, necr...

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La Malattia di Behcet (IT)

La malattia di behcet è una Vasculite sistemica da causa sconosciuta coinvolgente le arterie e le vene di qualsiasi calibro.

La diagnosi, poichè non può avvalersi di nessun...

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Behçet’s Syndrome Events

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  • February 2012

  • VII International Conference on Rare Diseases and Orphan Drugs (ICORD 2012)

    From 4 to 6 February 2012

    A global meeting on international cooperation and public health policies focusing on research, diagnosis, development of and access to treatment, and care for rare diseases, will be held in Tokyo. The VII ICORD Conference will offer a platform for the exchange of perspectives for medical and healthcare professionals, patients and patients’ groups, basic and clinical researchers, policy-makers, government officers and pharmaceutical, biotechnology and medical device industries.

    More info

  • Rare Cancers Conference: Improving the Methodology of Clinical Research

    On 10 February 2012

    The European Society for Medical Oncology and Rare Cancers Europe have joined forces to present the first Conference addressing the scientific and educational needs of relevant stakeholder groups concerning challenges and potential solutions in the field of clinical research on rare cancers. The conference will take place in Brussels, Belgium.

    More info

  • National Health Policy Conference

    On 13 February 2012

    The National Health Policy Conference (NHPC) provides clarity on the nation's critical health policy issues for the upcoming year and delivers a program with insider perspectives from health policy leaders to an audience that includes researchers, policy experts, and advocates. This event is taking place in Washington, D.C.

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  • 5th International Rare Disease Day 2012

    From 29 February to 1 March 2012

    February 29, 2012 marks the fifth international Rare Disease Day coordinated by EURORDIS and organised with rare disease national alliances in 25 European countries.On this day hundreds of patient organisations from more than 40 countries worldwide are organsing awareness-raising activities converging around the slogan “Rare but strong together”. Activities will take place across Europe, all the way to Russia, continuing to China and Japan, in the US and Canada, and as far as Australia and New Zealand! United States participants can find more information here: http://rarediseaseday.us/

    More info

  • RE (ACT) Congress

    From 28 February to 2 March 2012

    International Congress on Research of Rare and Orphan Diseases Basel, Switzerland

    More info

Behçet’s Syndrome community news

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    Development of Behçet's disease in a Caucasian with human leukocyte antigen B51 after immigration to Japan.
    News, published 3 months ago

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    Novel genetic analysis in Behçet's disease
    News, published 4 months ago

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    In a recent report, Fei and coworkers presented the results of the first genome-wide analysis of patients with BD. These findings suggest new pathways for investigation in this complex disease.

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    The effect of Behçet's disease on sexual function and psychiatric status of premenopausal women.
    News, published 4 months ago

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    CONCLUSION: FSD is more common in BD patients than in healthy subjects. We conclude that depressive mood according to the BDI scale correlates with the sexual status of BD patients, and this may be because of the depressive effect of BD as a chronic disease.

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    Writing for Life
    News, published 4 months ago

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    Millie was a poet, new media artist, mathmetician, and patient advocate. Unfortunately, she passed away at age 36 with complications related to her Behcet's disease. Her mother Martha shares Millie's amazing story here.

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    Richards ready for 400 title defence
    News, published 4 months ago

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    Richards, who set the American 400m record of 48.70 in 2006, suffers with the rare ailment Behcet's disease, which can cause mouth ulcers that make eating painful and lesions that bring pain to the skin on her legs.

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    Is headache in Behçet's disease related to silent neurologic involvement?
    News, published 6 months ago

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    OBJECTIVES: Headache is an interesting issue in Behçet's disease (BD). This study aimed to investigate if headache or a special type of headache was correlated with silent neurologic involvement in BD patients without any neurologic sign.

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    Infliximab treatment trial in a patient with neuro-Behçet's disease unresponsive to other treatments
    News, published 7 months ago

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    This case supports that infliximab, anti-TNF-alpha agent, is a good candidate for neuro-Behçet's disease treatment when it is resistant to conventional immunosuppressive agents such as corticosteroids or methotrexate.

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    Behçet disease: evolution of clinical manifestations.
    News, published 8 months ago

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    Abstract

    Clinical phenotypes of Behçet disease (BD) vary among ethnic groups. We chronologically analyzed the clinical manifestations of BD in 412 patients meeting the Japanese criteria for BD seen at 2 Yokohama City University...

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    Cross-cultural adaptation and validation of Behcet's disease quality of life questionnaire.
    News, published 8 months ago

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    Currently, there is one Behcet's disease (BD) specific self reporting questionnaire developed and published in the literature, The Leeds BD-quality of life (QoL). We conducted a cross-cultural adaptation and validation of the Arabic version of the Leeds BD-QoL...

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    UNL student wins Truman scholarship - Lincoln Journal Star
    News, published 9 months ago

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    Schlichting plans to use the scholarship to pursue master's degrees in public health and public policy. Equal access to health care is important to Schlichting, who was diagnosed with a rare autoimmune disorder, Behcet's disease, during her freshman year of college.