A game for all of the family


Are you looking for game for all of the family to enjoy?
During lockdown, Chris Hand kept himself busy designing and producing a card game which helped to keep his family and friends entertained. Chris hopes his game could be an opportunity to raise money for BBS UK, as a thank you for all of the support the Charity gives to his family.
If you would like to donate £10 to and email your address to the secretary of BBS UK,, a game will be sent out to you. This lovely game is for 2 - 8 players and is great fun for everyone aged 8 and over.

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