Behçet’s support groups

Groups are run by volunteers with personal experience of Behçet’s or long-term involvement in the Behçet’s community. While Behçet’s UK and our volunteers cannot provide medical advice, we can guide you to reliable information. Hearing about what has worked for others can also support your conversations with your own healthcare team.

Important: stories and tips shared in the groups reflect individual experiences. What works, or doesn’t work, for one person may not be the same for others. You must never delay seeking medical advice, ignore professional guidance, or stop/change your treatment based on information shared in support group meetings.

We’re here to support each other, listen, and learn together.

Our Support Groups

If you’d like to know more about our Support Groups please view our Frequently Asked Questions

Join a Behçet’s Support Group

Behçet’s Support Groups – Frequently Asked Questions

What is the purpose of the Behçet’s support groups?

Our support groups provide a safe, welcoming and supportive space for people living with Behçet’s, caregivers, and family members to share experiences, ask questions, and access helpful resources.

Who can join?

Anyone in the UK who has been diagnosed with Behçet’s, or is a caregiver or family member, and who wants to learn more and connect with others affected by the condition. See the group description for specific details about each group.

How do I join an online meeting?

Our online meetings are hosted via Zoom. You’ll receive a link by email before the meeting. Be sure to check your spam or junk folder, and add info@behcetsuk.org to your safe senders list to ensure our emails reach your inbox.

No special software is required but for the best experience, we recommend joining on a computer or tablet and . To join, simply click the link in your email, and Zoom will open in your web browser. Alternatively, you can install the Zoom desktop or mobile app and enter the meeting code and password provided in the email.

I’ve not used Zoom before. How do I use it?

We will send you a joining link in the invitation email.  To join the meeting, you just need to click on the link which will launch Zoom through your web browser.  Alternatively, you can install a desktop client or mobile app.

For guidance, Zoom’s Getting Started with Zoom Meetings guide is helpful.  We recommend reviewing these sections:

• How to join a meeting
• How to connect to audio
• How to turn on your video and add a virtual background
• How to chat with others
• How to view captions

If you’d like extra support, we can arrange a short 1-to-1 session before the meeting. This lets you test your internet connection, audio/video setup, and get comfortable with Zoom’s basic features.

To schedule a session, email us at least 7 days before the meeting so we can find a suitable time.

I am hard of hearing. Do the online meetings have subtitles?

Yes, we enable closed captions on Zoom. Click on Zoom’s Getting Started with Zoom Meetings guide and select “How to view captions”

Do I need to register in advance?

You don’t need to register for each individual meeting. However, you must first join the relevant support group using the online form (above). Once you’ve joined a group, you will automatically receive invitations to all upcoming meetings as they are scheduled.

If you no longer wish to receive meeting invitations, simply reply to the invitation email or contact us at mailto:info@behcetsuk.org, and we will remove you from the mailing list.

Is there a cost to attend?

Online support groups are free to attend.

In-person meetups may have a charge depending on the activity.

How long are the meetings?

Online meetings are typically 60-90 minutes, depending on how much discussion there is. You don’t need to stay for the entire session and can join at any time, but we encourage joining near the start to take part in greetings and introductions.

In-person meetups vary depending on the activity.

Do I need to have my camera on for online meetings?

We ask that you turn on your camera at the start of the Zoom meeting for greetings. After that, you can turn your camera on or off as you wish.

This request comes from feedback from members who said it feels more comfortable, especially during personal discussions, to see who is present.

If you are unable or prefer not to use your camera, please contact us before the meeting so we can arrange an alternative way to identify you on Zoom.

What is the format of the support group meeting?

Each group facilitator may run their meeting slightly differently. Typically, there may be a general discussion where everyone can chat and ask questions, guided by the facilitator based on participants’ input. Some sessions may focus on a specific topic or include a guest speaker.

For in-person meetups, full details will be provided in the invitation email.

Do I have to speak during online meetings?

During the welcome greetings, most facilitators invite everyone to say a few words to introduce themselves. If you’re not comfortable speaking, please email us at info@behcetsuk.org when you receive the meeting invite, and we will inform the facilitator in advance.

What can I talk about in the meeting?

• Personal experiences with symptoms, diagnosis, and treatments
• Coping strategies and lifestyle tips
• Emotional support and mental health challenges
• Questions about clinical care (note only your healthcare provider can give medical advice)

Group meetings have limited time, so for detailed questions or personal support, please reach out to our helpline where we’ll be happy to provide one-to-one guidance.

Can I ask questions about treatments or medications?

Yes, but please remember this is a peer-support group. Medical advice should always come from a qualified healthcare professional.

How is privacy handled?

We ask everyone to respect confidentiality and not share personal information outside the group. Meetings are not recorded unless we let you know in advance, and you’re welcome to use just your first name if that feels more comfortable.

What if I experience a medical emergency?

Our groups are not for urgent medical concerns. If you are in crisis or have severe symptoms, contact your healthcare provider or emergency services immediately.

If you experience a medical emergency during a support group session, or if we have serious concerns about your wellbeing, we may need to contact emergency services in line with our safeguarding policy.

Can you give medical advice?

No. Behçet’s UK and our volunteers cannot provide medical advice. However, we can help by signposting you to reliable sources of information and sharing what has helped others, to support discussions with your own healthcare team.

Please remember our groups offer peer support – stories and tips shared in the groups reflect individual experiences. What works, or doesn’t work, for one person may not be the same for others. You must never delay seeking medical advice, ignore professional guidance, or stop/change your treatment based on information shared in support group meetings.

Can I have individual support?

If you feel you need individual support, our helpline volunteers can offer one-to-one guidance and listening. While we cannot provide medical advice, we can help you access reliable information and signpost you to professional services.

Find out more about our helpline

Can I bring a friend or family member?

For online meetings, if they are joining from a separate device, they should register their interest in the group by completing the online form.

For in-person meetups, please refer to the invite email, as places may be limited.

How often are meetings held?

The frequency of meetings varies by group, depending on demand and volunteer availability. We will email you as soon as a meeting is scheduled.

Who runs the meetings?

Meetings are facilitated by volunteers with personal experience of Behçet’s or long-term involvement with the community. Occasionally, guest speakers such as healthcare professionals may also join.

How can I provide feedback or suggest topics?

Yes, please email info@behcetsuk.org