About the Behçet’s Syndrome Working Group

Behçet’s syndrome is a rare disorder that affects several organs and organ systems. It is characterized by inflammation of the vessel wall and it can involve vessels of all sizes and both veins and arteries. It affects men and women, often before age 30, causes significant reduction in quality of life, can result in serious disability, and may be life-threatening. The disease course, severity, and organ involvement varies substantially between patients, and differences occur based on age at presentation and sex, making it quite difficult to recommend a single management strategy. The most common manifestations are mouth ulcers followed by genital ulcers, other skin lesions, and inflammation of the joints. These manifestations follow a relapsing and remitting course and impair the quality of life of patients with Behçet’s syndrome. When organ involvement is present in addition to the skin and joint inflammation, Behçet’s syndrome may be organ- or life-threatening. Eye involvement affects almost half of the patients and can cause blindness if not treated. The vascular system can be involved, usually in the form of blood clots of large veins. Arterial involvement causes enlargement of the arteries and can be fatal if the arteries rupture. Gastrointestinal system involvement results in ulcers in the bowels that can cause serious bleeding. Nervous system involvement can cause permanent damage and disability. Behçet’s syndrome usually starts between the ages of 20 and 30 years, with an almost equal frequency among men and women. However, the serious organ manifestations are more frequent among men and those whose disease start at an earlier age. Management of Behçet’s syndrome depends on the age and gender of the patient, the organs that are involved and the frequency and severity of each type of lesion.

gulen hatemi

Gulen Hatemi


Peter Merkel

Peter Merkel


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Nihal Esatoglu

OMERACT Endorsed Core Domain Set for Behçet’s Syndrome

Behcets Core set

Working Group Members:

Ahmet Gul
Alessandro Tomelleri
Alexa Meara
Alireza Meysami
Alfred Mahr
Alwin Sebastian
Amir Rezaee
Anetta Chrzanowska
Annelies Boonen
Antoine Sreih
Anupam Wakhlu
Aya Akmal Amin
B Robert Mozayeni
Beverley Shea
Carol Langford
Catherine Hill
Chetan Mukhtyar
Christian Dejaco
Christian Pagnoux
Christoph Pohl
Corrado Campochiaro
Dario Camellino
Dario Scublinsky
David Jayne
Durga Prasanna Misra
Elisabeth Brouwer
Esen Cam
Fahimeh Farjami
Fatma Alibaz-Oner
Fiona Campbell
Francesco Caso
Gabriela Tabaj
Gehad Maghraby
George Casey
George Wells
Georgia Lanier
Ghaydaa Dabie
Gonca Mumcu
Gulen Hatemi
Gunnar Tomasson
Haner Direskeneli
Heidi Nugent
Ibrahim Almaghlouth
Ilfita Sahbudin
Inna Gaydukova
Jackie Peck
Jill Dawson
Joanna Robson
John Farrar

Judy Shea
Kaitlin Quinn
Karen Herlyn
Karla vanessa Jirón Mendiola
Kate smith
Katelyn Zottenberg
Katherine Kellom
Kenta Misaki
Krystyne King
Kyung Min Ko
Lays De Souza
Maarten Boers
Magali Travaglia
Maria Bjorkvidarsdottir
Maria Teresa Romero de Albrecht
Marlene Morrison
Marta Moura
Maxine Isbel
Mert Gurcan
Nataliya Milman
Nihal Esatoglu
Nino Tsiskarishvili
Noreen Nasir
Pauline Parris
Peter Cronholm
Peter Grayson
Peter Merkel
Peter Tugwell
Raashid Luqmani
Raouf Hajji
Robin Christensen
Rodica Olteanu
Ruoning (Lemon) Ni
Samar Tharwat
Sarah Mackie
Sasikala Bheemireddy
Sevil Kamali
Shawna Grosskleg
Sibel Zehra Aydin
Sinem Nihal Esatoglu
Susan Beard
Tamer Gheita
Tanaz Kermani
Teodora Serban
Toby Helliwell
Virna Levi
William Lichliter
Wolfgang Schmidt
Yasser El Miedany
Yesim Ozguler
Yusuf Yazici

Interested in joining the working group as a member?

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