Annual Conferences

Our annual family conference weekend brings members of the community together with interested professionals and experts to provide updates on the latest research and the opportunity to participate in tailored workshops.

Importantly, there it’s a safe space to connect and share advice and support with each other, the team at BBS UK, and invited relevant, external organisations.

BBS UK Conference 2023

Team BBS UK were delighted to return to the Hilton Hotel, Northampton, to once again welcome delegates from far and wide for a weekend of learning and sharing experiences about all things BBS.

The Hilton Hotel, Northampton, centrally located for rail, road and air travel, has been home to our Conferences for over 25 years. Many of the staff have been with us from the beginning and they pride themselves on their service and exceptional attention to detail throughout the weekend, and what a fabulous weekend it was.

Initial feedback has been excellent and we have received lots of ideas for future events also - thank you to all of you who have completed an evaluation form; we will publish a report of your feedback here, in the coming weeks.

Edited versions of the presentations will be included in the next newsletter, due out in December, and the full recordings can be viewed below.

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BBS UK Conference 2023 Recordings

YouTube

126 views 11 October 2023 11:20 am

Laura Dowswell welcomes attendees both in person and through the livestream to the 2023 BBS UK Annual Conference.

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YouTube Video UEx1MUtSZ1poYXIzUXNRbGUtbVdWaUNTRjdnMXpMR1h0MS45ODRDNTg0QjA4NkFBNkQy

Welcome to the 2023 BBS UK Annual Conference: Laura Dowswell, BBS UK Chair

166 views 11 October 2023 11:20 am

Professor Phil Beales gives an update on research for #bardetbiedlsyndrome and Professor Helen May-Simera asks for participation in the research questionnaire.

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YouTube Video UEx1MUtSZ1poYXIzUXNRbGUtbVdWaUNTRjdnMXpMR1h0MS45NDk1REZENzhEMzU5MDQz

Update on Research of BBS: Prof. Phil Beales & Research Questionnaire: Prof. Helen May-Simera

58 views 11 October 2023 11:21 am

Doctor Elizabeth Forsythe invites those who attend the BBS clinics to take part in the BBS Registry.

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YouTube Video UEx1MUtSZ1poYXIzUXNRbGUtbVdWaUNTRjdnMXpMR1h0MS4wMTcyMDhGQUE4NTIzM0Y5

BBS Registry: Doctor Elizabeth Forsythe

70 views 11 October 2023 11:20 am

Dr David Game speaks about how the kidneys create urine, kidney and bladder differences in BBS, as well as tips on good urological health.

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YouTube Video UEx1MUtSZ1poYXIzUXNRbGUtbVdWaUNTRjdnMXpMR1h0MS5GNjNDRDREMDQxOThCMDQ2

Urology Differences in BBS: Dr David Game

48 views 11 October 2023 11:20 am

Dr Jane Waite shares a presentation about how to maintain the wellbeing of someone with #acrossbardetbiedlsyndrome across their lifespan.

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YouTube Video UEx1MUtSZ1poYXIzUXNRbGUtbVdWaUNTRjdnMXpMR1h0MS4xMkVGQjNCMUM1N0RFNEUx

Maintaining Wellbeing across the BBS lifespan: Dr Jane Waite

92 views 11 October 2023 11:20 am

Ciaran Moy gives his Personal Perspective of being a Dad from Ireland with a young song who was recently diagnosed with #bardetbiedlsyndrom

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YouTube Video UEx1MUtSZ1poYXIzUXNRbGUtbVdWaUNTRjdnMXpMR1h0MS41MzJCQjBCNDIyRkJDN0VD

Personal Perspective: Ciaran Moy

159 views 11 October 2023 11:20 am

Dr Elizabeth Forsythe speaks about obesity in BBS, gives an update on the clinical trial, and the BBS registry.
Dr Lukas Foggensteiner speaks about current drug treatments for obesity.
Sarah Flack speaks about the importance of diet and exercise.

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YouTube Video UEx1MUtSZ1poYXIzUXNRbGUtbVdWaUNTRjdnMXpMR1h0MS5DQUNERDQ2NkIzRUQxNTY1

Obesity and how we manage weight in BBS: Dr Elizabeth Forsythe, Dr Lukas Foggensteiner, Sarah Flack

390 views 11 October 2023 11:20 am

David Prince, a Microsoft Account Manager, gives an overview of some useful accessibility settings in Microsoft to help people with #visualimpairment or #learningdifficulties

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YouTube Video UEx1MUtSZ1poYXIzUXNRbGUtbVdWaUNTRjdnMXpMR1h0MS4wOTA3OTZBNzVEMTUzOTMy

Introduction to Microsoft and Accessibility: David Prince

61 views 11 October 2023 11:20 am

Matt Harrison speaks about the Thomas Pocklington Trust, and Rachael Foley speaks about her experience as part of the Sight Loss Council.

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YouTube Video UEx1MUtSZ1poYXIzUXNRbGUtbVdWaUNTRjdnMXpMR1h0MS40NzZCMERDMjVEN0RFRThB

Thomas Pocklington Trust: Matt Harrison & Sight Loss Councils: Rachael Foley

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Conference Schedule

Friday: Guests arrived on the Friday afternoon/evening and enjoyed the opportunity to relax in an inclusive and welcoming environment. During the evening we held a children/young people’s group meeting, a meeting for first time attendees and a social event for adults who have BBS.
Saturday: The main conference programme took place on the Saturday with an excellent mix of presentations and workshops including with Professor Beales, who gave an overview of research and development in the world of BBS. For our younger members, there was a fun-filled day trip to enjoy (accompanied by a parent/family member) and, for the little ones, a pop-up crèche.
Sunday: The programme continued on the Sunday morning with updates from BBS UK, a personal perspective and the AGM; the children and young people enjoyed a range of activities to keep them busy, including a taster session with British Blind Sports. Tea and pastries were served late morning before we all said our farewells.