2 virtual events offer worldwide BBS community connection
UK conference livestream, BBS Global Day provide opportunities for learning
Written by |
Two online events are planned for the BBS community in coming weeks.
The Bardet-Biedl syndrome (BBS) community will have two major opportunities in the coming weeks to come together, connect, and learn online.
This weekend, Sept. 25-27, is the BBS UK Annual Conference, a yearly event put on by U.K.-based advocacy group BBS UK. The family conference’s focus this year is on living well with BBS.
The in-person event in Northampton, England, is booked, but attendees from around the world can still sign up for a Zoom livestream covering Saturday’s morning program.
“Our annual family conference weekend brings members of the BBS community together with researchers, clinicians, and other interested professionals for a weekend of learning, connection and shared experiences around Bardet-Biedl syndrome,” BBS UK says on the conference website. “Attendees can look forward to inspiring speakers, research and clinical updates, personal stories, and plenty of opportunities to meet others in the community.”
The conference will begin late Friday when attendees arrive. There will be a social event for adults with BBS, a meeting for first-time attendees, and a group activity for kids.
Saturday, the main day of the conference, will feature a lineup of speakers who are experts in the care, management, and research of BBS, as well as a day trip and pop-up crèche for younger attendees. Saturday evening’s entertainment includes a family quiz, karaoke, a raffle, and a movie night.
On Sunday, in-person guests can enjoy breakfast at the hotel and share their questions, worries, or concerns with appropriate teams from the association.
BBS Global Day
A week after the conference, on Oct. 3, the worldwide BBS community will have the opportunity to come together for BBS Global Day, an annual event celebrated since 2021 to raise awareness of BBS and funding for research.
The day features a free webinar at 11 a.m. with researchers, doctors, and BBS leaders from across the globe.
“We’ll be hearing updates from the global community including from the [U.S.-based] BBS Foundation and BBS UK conferences, from extraordinary people with BBS pushing limits and boundaries, reviewing the latest basic and clinical research and more,” BBS UK said on its website.
The BBS Global Day webinar is being put on by an international coalition of advocacy groups, including the BBS Foundation, BBS UK, Bardet-Biedl Stichting in the Netherlands, and BBS Switzerland. A recording of last year’s webinar is available on YouTube.
BBS is a rare genetic disease that results in a wide range of symptoms, including obesity, vision problems, and learning disabilities. These symptoms can vary in nature and manifest at any age, making BBS diagnosis difficult.
One therapy, Imcivree (setmelanotide), is currently approved to treat BBS. It is used to reduce excess body weight and maintain long-term weight reduction in children and adults with the disease.
