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Share Your Personal Journey
with Behçet’s Disease

From diagnosis to daily life, each person’s experience with Behçet’s Disease is different. Create a personalized infographic by answering a brief questionnaire about your journey as a patient or caregiver of a loved one with Behçet’s Disease. Then help raise awareness by sharing your personal journey with Behçet’s Disease on social media using #myBehcetsJourney.


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Organizations and Websites


The American Behcet’s Disease Association (ABDA) supports, educates, and empowers the Behçet’s community, while continuously advocating for better research diagnostics, treatment, and a cure.

The ABDA website offers a wide range of information specific to Behçet’s Disease.

Visit ABDA at:

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The National Organization for Rare Disorders (NORD) is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them.

The NORD website provides extensive information on a large number of rare diseases, including Behçet’s Disease.

Visit NORD at:

The Vasculitis Foundation is a membership-based organization of patients with vasculitis, caregivers, friends, family, physicians, and researchers advocating for early diagnosis, better treatments, and improving quality of life for patients with vasculitis, including Behçet’s Disease.


Hosted by trusted patient advocates, RareConnect is a place where rare disease patients can connect with others globally.


Clinical Resources

Recognizing Behçet’s Disease

Tips and information for when you suspect Behçet’s Disease

What is Behçet’s Disease?

A brief overview of Behçet’s Disease for newly diagnosed patients

Manifestations of Behçet's Disease

The most common manifestation of Behçet's Disease is mucocutaneous lesions accompanied by lesions in other organ systems.

Images of Behçet’s disease manifestations

Working to make a difference in behçet's disease

In Behçet's Disease, every patient's experience is different

See what advocates have to say about raising awareness for Behçet's Disease and helping bring more resources to patients in need.

Video Transcript

Person living with Behçet’s Disease

ASHLEY: Three words I would use to describe Behçet’s Disease are unpredictable, grueling, and fierce.

DR. YAZICI: Frustrating.

ROCHELL: Exhausting.


DR. CALAMIA: Variable.


CATHY: Mystifying.

DR. MAHR: Under recognized.

Kenneth Calamia, MD
Consultant, Rheumatology, Mayo Clinic Florida
Professor of Medicine, Mayo Clinic School of Medicine and Science

DR. CALAMIA: Behçet’s Disease is a disease of unknown cause. A rather uncommon disease, especially in the United States and in Western countries.

Cathy Ferrone
Advocacy Relations Director, Amgen

CATHY: Symptoms fluctuate from day to day, year to year, and from patient to patient.

Yusef Yazici, MD
Clinical Associate Professor, Department of Medicine, New York University

DR. YAZICI: Behçet’s is not fully understood, physicians usually misdiagnose it.

Franco Barrientos, MD
American Behçet’s Disease Association

DR. BARRIENTOS: It could take up to three years to diagnose it, even more.

Person living with Behçet’s Disease

ROCHELL: I had initially been diagnosed with lupus for a full year. They then thought that I had MS.

ASHLEY: No one could understand why a 19-year-old girl could be so sick. My bloodwork would always turn out normal.

DR. YAZICI: Most commonly, patients see four to five physicians before they are even considering Behçet’s as a possible diagnosis, and they’ve lost precious time.

Alfred Mahr, MD, PhD
Professor of Internal Medicine and Chief of the Division of Internal Medicine, Hospital Saint-Louis

DR. MAHR: The most distressing symptom in Behçet’s, just because it’s so common, is mucocutaneous disease, especially oral ulcers. The pain, the fact that it affects speaking, eating…

ROCHELL: My family has had to adapt to my slower pace, which is very hard for me because normally I would leave them in the dust.

ASHLEY: Socially, I can’t keep up with the people my age.

DR. YAZICI: One of the main issues in Behçet’s management is that we don’t have adequate resources, neither for the patients nor for the doctors.

DR. CALAMIA: Behçet’s is not a hopeless condition and I think there’s a lot of reasons for patients to have hope.

For more information, visit

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04/20 - US-CLG-20-0054


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Resources for Your Patients with Behçet’s Disease

The Vasculitis Pregnancy Registry collects information on the reproductive health of women with vasculitis who become pregnant. Online surveys assess a) vasculitis severity and pregnancy-related experiences and b) pregnancy outcomes.

Visit V-PREG at:

The Vasculitis Patient-Powered Research Network works to improve the health of patients with vasculitis. Studies directly engage investigators, caregivers, and health systems to advance the medical knowledge and care of vasculitis.

Visit VPPRN at:

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