Research study: Person characteristics and well-being in Bardet-Biedl Syndrome


Research study: Person characteristics and well-being in Bardet-Biedl Syndrome

Individuals with Bardet-Biedl syndrome (BBS) report experiencing emotional difficulties in addition to physical health difficulties. We want to find out more about what factors impact well-being in BBS. Researchers at Aston University are running a research project collecting questionnaires and asking individuals with BBS to do some tasks. We hope it will help doctors and healthcare services to know which person characteristics are related to well-being in BBS.
We are hoping to recruit 120 individuals with BBS or a parent/carer/person who supports them to complete some questionnaires and interviews.

The questionnaire takes approximately 45 minutes to complete and families will receive a £5 voucher for their participation. Please note: all families who have previously taken part will be contacted soon about receiving their voucher.

How can families become involved?

If you would like to learn more about what is involved in the study and register your interest, you can do this by:

• Completing an expression of interest form at

• Telephone: Dr Jane Waite- 0121 204 4307 or Arianna Paricos - 0121 204 4996.

• Email: Dr Jane Waite or Arianna Paricos on

• More detailed information can also be found at the following website:

Registering an interest does not commit you to taking part. You will have a chance to make your decision about getting involved once you have read the information sheets.

BBS UK Calendar Photograph Competition


Do you take photos? Brilliant! We want to share them with the BBS family and friends. This year we are having a photo competition, producing the first ever BBS U.K. calendar.
Competition is open to all members of BBS U.K.

Not only is the Platinum Jubilee nearly upon us, but the sun is shining and though many of us are still being careful, it is great to be out and about and we want the 2023 calendar to reflect this new found freedom and enjoyment of our surroundings.
As long as YOU have taken the photo, we want you to enter.

Sporting events: last games of the football season, paddle boarding, tennis, cricket, park runs, motocross, cycling, scrambling, gymkhanas.
Outdoor events: your favourite spot in the garden, favourite family walks, National parks, historic houses and nature resorts, walking alpacas, picnics, the coast, canal towpath.
Home, work, school, anywhere.
Choose any time of day or weather that’s good for you: dawn, mornings, afternoon, sunset, night-time, sunshine, storms, snow, whatever it is all are welcome.

Whatever the subject, take some great photos and we will be choosing 12 for our calendar.
Closing date for digital electronic copies of the photos will be 26th August 2022

Send your photo in an email to along with your contact details, a short description of what the photo is of, and when/where it was taken.

All 12 photos will be on show at the conference, and the calendar cover photo will be the photo that gets the most popular votes from conference attendees.
Calendars will be available to buy from beginning of October 2022

Looking forward to sharing your memories.

Sarah Leadbetter wins RNIB's Campaigner of the Year


Huge congratulations to Sarah Leadbetter who has this week won the RNIB's See Differently Award for Campaigner of the Year.
Sarah has BBS, is registered blind, uses a cane and has a guide dog.
Sarah has been campaigning on behalf of blind and partially sighted people for many years. Her actions have included presenting petitions to 10 Downing Street, speaking to MPs about changes to Employment and Support Allowance and campaigning against street clutter and shared spaces.
When the covid-19 pandemic struck, Sarah was classified as clinically extremely vulnerable. She received letters from the government detailing health advice, but she was unable to read the information because the letters were in an inaccessible format. As a result, Sarah was unaware she should have been taking extra precautions.
Since then, thanks to Sarah's work with the Government, both vaccine and shielding correspondence have been provided in accessible formats for those who have it registered on their GP record.
Sarah concludes: “I campaign so I can be a voice for people who can’t fight themselves. I’m taking action for them.”

BBS UK Sunflower Notelets now in stock!


Judged in September 2021, the Best Bloomin’ Sunflower competition was a huge success and many BBS UK members welcomed the glowing golden flowers into their gardens, allotments, and plant pots! Some were lemon, some orange and others a wonderful deep yellow. All were tall, some taller than others and the winner, Aneeba Ahmed, had sunflowers which reached the top storey of her house.

We have produced bright and cheery notelets (blank inside for your own use), for sale at £7.50 per pack of 10 (inc. p&p) which are now available to buy. To place an order, email, stating your name, address and required number of packs.

Payment can be made via bank transfer to:

Acc Name: Bardet-Biedl Syndrome UK

Acc No: 20368253  Sort Code: 20-19-97

Please include your surname and 'Sunflower Cards' in the reference.


Alternatively, cheques can be made out to Bardet-Biedl Syndrome UK and sent to 1 Blackthorn Avenue, Southborough, Tunbridge Wells, Kent, TN4 9YA, marking the reverse of the cheque 'Sunflower Cards'.


BBS UK gains PIF TICK accreditation to become a ‘trusted information creator’


BBS UK has been awarded the PIF TICK – the UK’s only quality mark for print and online health information.

To become a ‘trusted information creator’, BBS UK had to undergo an assessment showing it met 10 key criteria.

This means you can be assured that what you are reading, watching or listening to is evidence-based, understandable, jargon-free, up-to-date and produced to the best possible standard.

Service Manager, Tonia Hymers said: “Gaining the PIF TICK shows we have a strong process for developing our health information resources. With so much information online it can be difficult to know what to trust. This quality mark is a quick and easy way for people to be assured our information is reliable and trustworthy.

The PIF TICK, which launched in May 2020 is run by the non-profit Patient Information Forum (PIF).

In July 2021, a public website,, was launched to raise awareness of PIF TICK accredited members and help people find trusted health information.

The site also includes guides on topics including spotting false health information and understanding evidence.

PIF TICK manager Dan Wills said: “We are thrilled to welcome BBS UK to our ever-growing community of accredited PIF TICK members. Accurate, accessible, evidence-based information is key to increasing patient empowerment and improving health outcomes.”

Cooking for visually impaired - Gareth is an inspiration!


A wonderful video from Gareth, a young member of BBS UK sharing his love for cooking! Gareth borrowed some specialist cooking equipment for the visually impaired from his local council and used it to make some very tasty looking cookies. Well done Gareth!

The Body and Mind Toolkit for Adults and Children

mental healthBBS UK would like to extend our thanks to Bernie Stocks, Commissioning Manager, Highly Specialised Services, NHS England. Bernie has kindly shared some of the fantastic resources a number service leads, charities and stakeholder groups have provided to help people manage better through the second phase of the pandemic. Within the document you will find links to advice and information on wellness and sleep and diet and exercise with a particular focus on how to manage these aspects of health during the COVID-19 period. Click on the link below to download the document. If there is anything you would like to clarify or if you need any further information please feel free to contact us, we’re here to help!

The Body and Mind Toolkit for Adults and Children