By Ashley Pelletier, Executive Director of the American Behcet’s Disease Association (ABDA)
On May 20, Behçet’s Disease Awareness Day, and all month long, the American Behcet’s Disease Association (ABDA) is spreading the word about this rare, systemic, autoimmune form of vasculitis and what patients, caregivers, and doctors need to know. ABDA is hosting a number of activities to educate, raise funds, and unite the Behçet’s disease community, and there are ways for everyone to get involved—starting with familiarizing yourself with the signs of this condition.
What is Behçet’s Disease?
First discovered in 1937, Behçet’s is now recognized worldwide, although its epidemiology and severity vary widely. This form of vasculitis can affect all types of blood vessels, with increased risk associated when larger vessels are impacted. Symptoms include oral, genital, or skin lesions and ocular inflammation of both the anterior and posterior uveitis, resulting in blurred vision and light sensitivity. These can appear in otherwise healthy individuals. Approximately 50% of patients will experience arthritis, while 25% may have gastrointestinal ulcers. As many as 30% of patients may also have nervous system involvement, affecting the white matter of the brain and the brain stem and resulting in headaches, confusion, memory loss, and potential strokes.
A chronic disease, Behçet’s may present in periodic flare-ups followed by temporary remission. It is treated by a multidisciplinary team led by rheumatologists, and treatment largely consists of symptom management to reduce discomfort. Treatment is highly individualized, and while available medications can help manage inflammation, reduce flares, and prevent complications, there is still no cure. Patients continue to face delays in diagnosis, limited awareness among providers, and a need for more research, better treatment options, and improved support.
ABDA’s website, behcets.com, features extensive information about diagnosis and treatment, as well as guides for patients and caregivers who are navigating a new diagnosis or suspect they may have Behçet’s. Scroll down to the end of this Guest Blog for links to these resources.
What is the current state of Behçet’s disease research and funding?
Companies, researchers, and investors should understand that Behçet’s remains an area of significant unmet need. There are opportunities to support improved diagnostics, better treatment development, clinical trial awareness, patient engagement, and medical education. ABDA can serve as a trusted partner and bridge to the patient community to help ensure research initiatives are grounded in real patient experiences.
Demand for ABDA’s patient support and educational resources continues to grow. We welcome partners who can help sustain our programs that keep patients and families informed, connected, and supported.
How can I get involved on Behçet’s Disease Awareness Day?
This Behçet’s Disease Awareness Day, we invite you to be part of something bigger than a single day of recognition. Whether you are living with Behçet’s, caring for someone who is, working in rare disease, or simply learning about this condition for the first time, your voice and support matter.
You can get involved by registering for ABDA’s patient experience webinar and Virtual Awareness Walk, sharing educational resources, volunteering your time, telling your story, or making a donation to help sustain ABDA’s programs and services. Every post shared, story told, conversation started, and dollar donated helps bring greater visibility, understanding, and hope to the Behçet’s community.
- On Wednesday, May 20 at 6:30 p.m. ET, ABDA and the Vasculitis Foundation are hosting a patient experience webinar. This virtual roundtable discussion will feature individuals with experiences across different stages of the Behçet’s journey, offering honest insights into daily life and the evolution of symptoms over time. From how to manage flare-ups to what patients wish they had known earlier, this discussion is designed to provide real-world perspective, support, and connection for anyone affected by this disorder. RSVP for the webinar here.
- On Saturday, May 23, ABDA is hosting our 2026 “Walk Together for Behçet’s” Virtual Awareness Walk. This annual community activity allows anyone anywhere to participate, raising funds for ABDA while wearing blue and going for a walk of their choosing. A Zoom gathering on Saturday at 2 p.m. ET will convene all participants to celebrate each other’s efforts. Get moving for this great cause by signing up here.
- Share your Behçet’s story with others. May 20 is dedicated to you. This is your moment to tell others what it’s like to live with or care for someone with this condition and to voice feelings or needs that might otherwise go unheard. Social media is a powerful tool, and we invite you to join the conversation.
If you would like to volunteer, share your story through ABDA, explore partnership opportunities, or learn more about how to get involved, please contact ABDA at [email protected].
What resources are available year-round for patients and caregivers?
ABDA offers monthly support groups, annual summits, and a variety of ways to get connected to our community:
- Monthly support groups: ABDA offers monthly Community Connection support groups to bring patients are caregivers together and reduce isolation. To join, email [email protected] for the meeting link.
- Patient Summits: Stay tuned for information about ABDA’s annual virtual Patient Summit!
- ABDA’s Free Literature Kit: Get our informational brochures delivered to your home and your doctor’s office by placing an order here.
- Explore our Webinar Library: Catch up on past webinars here.
- Read our book: Read an acclaimed book by longtime ABDA member Joanne Zeis, available on Amazon.
- For immediate support, call ABDA’s hotline: (800) 723-4238 or (800) 7-BEHCET.
- Email ABDA at [email protected].
- Follow ABDA on Facebook, Instagram, and LinkedIn.
We also encourage you to bookmark and share the following medical resources:
- Medical Summary: behcets.com/medical-summary
- Symptoms: behcets.com/symptoms
- Diagnosis: behcets.com/diagnosis
- Treatment: behcets.com/treatment
To learn more, access resources, participate in Awareness Day efforts, or support ABDA’s work, visit behcets.com.
ABDA is one of more than 350 NORD Member patient advocacy organizations. Learn more about NORD Membership here.
