Loading Events

« All Events

BBS UK Virtual Conference

May 14 - May 15

Cambridge Rare Disease Network - BBS UK Virtual Conference 1
16 / 100

About the virtual eventCambridge Rare Disease Network - BBS UK Virtual Conference 2

Our annual conference is back, this time available virtually via ZOOM on Friday 14th May (between 1pm – 4:30pm) and Saturday 15th May 2021 (between 1pm – 5pm).

The event will be free of charge and will feature a selection of talks about research and development in the world of BBS as well as advice, guidance and the much anticipated and valued personal perspectives from patients living with BBS. We will also be providing the opportunity to ask our panel of experts any questions you may have.

Conference Programme

BBS UK Professionals Conference  Friday 14th May

Do you support someone with Bardet-Biedl Syndrome? Would you like to improve your knowledge and understanding of the Syndrome so that you can provide enhanced support?

Or maybe you are affected by BBS and would like to help those that support you.

Day 1 of the BBS UK Conference is open to everyone to join but specifically would benefit professionals looking to find out more about the condition.

  • Join live presentations from medical professionals
    • Learn about new and innovative research
    • Hear the latest advice and guidance from the experts and learn how you can better support those living with the Syndrome
    • Engage in live Q&A sessions
  • ‘The Lived Experience’ – Listen to the experiences of people living with BBS, the success stories as well as some of the common issues and problems they frequently face.
  • Join live presentations from BBS UK and find out about how the charity and clinics service has responded to the pandemic and the needs of members.

Confirmed speakers include:

  • Professor Phil Beales: Update on Research and Study of BBS
  • Dr Bob Haws: Centre of Excellence for BBS, USA
  • Dr Jane Waite: Person Characteristics and Wellbeing in BBS: Interim Results
  • Sarah Flack, Principal Dietitian, GOSH: Supporting weight management in BBS
  • Tonia Hymers, BBS UK: Multi-Disciplinary Clinics: Service Update
  • Liz Loughery, BBS UK: Membership Audit results/ BBS Resources for Professionals.

*The full conference programme with timings is still in the process of being agreed but will be published here as soon as all of the details have been confirmed*

Cambridge Rare Disease Network - BBS UK Virtual Conference 3

BBS UK Annual Conference  Saturday 15th May

We are very much looking forward to welcoming you all to our Annual Conference on Saturday 15th May. Although we are unable to meet in person, we are not going to let that stop us from coming together as a community to catch up with all things BBS!  The Annual Conference is open to everyone to join but specifically will benefit individuals with BBS and their families and carers. Dr Emma McGibbon will give a presentation on mental health and wellbeing and provide strategies for coping with anxiety and low-mood as we come out of lockdown. Members of the clinics teams will provide updates on the service and we will hear about the latest research from Professor Phil Beales.  The BBS UK team will give an update on the membership audit and the Charity’s five year plan and most importantly we will hear from and be inspired by those living with Bardet-Biedl syndrome.

The programme summary for Day 2 is as follows:

  • Join live presentations from medical professionals
    • Learn about new and innovative research
    • Hear the latest mental health and wellbeing advice from the experts
    • Engage in live Q&A sessions
  • ‘The Lived Experience’ – Listen to the experiences of people living with BBS, the success stories as well as some of the common issues and problems they frequently face.
  • Join live presentations from BBS UK and find out how
    • the charity has responded to the pandemic and the needs of members
    • the clinics service has adapted during lockdown and how face to face appointments will resume.

Confirmed speakers include:

  • Professor Phil Beales: Update on Research and Study of BBS
  • Professor Tim Barrett: BBS Clinics Home Testing Equipment Scheme
  • Dr Elizabeth Forsythe: Update on the Setmalenotide Study
  • Dr Emma McGibbon: (TBC) Anxiety & low mood: recovering from social isolation
  • Dr Helen May-Simera: Update on Urine Study
  • Tonia Hymers & Liz Loughery: Presentation of Membership Audit and 5 Year Plan

 

Event RegistrationCambridge Rare Disease Network - BBS UK Virtual Conference 4

All those that would like to join the conference will need to register in advance using the red buttons below, you will need to fill out 2 forms if you intend on joining both days. Upon registration, you will receive a link and password to access the conference.

Details

Start:
May 14
End:
May 15
Event Category:
View Event Website

Organiser

BBS UK

Venue

Online
Atarim

Dive straight into the feedback!
Login below and you can start commenting using your own user instantly

CRDN sign up to newsletter

Sign up to our monthly newsletter packed with news & events. Join our thriving rare disease community.

 

You have Successfully Subscribed!