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BBS UK on Facebook

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RNIB Connect Radio attended our #BBSConf2025 where they interview Professor Phil Beales, Dr Elizabeth Forsythe and also our Chair Emma Hughes.

You can listen to the BBS UK Annual Conference 2025 playlist for free at anytime through the RNIB Connect Radio website.

https://audioboom.com/playlists/4635743-bbsuk-annual-conference-2025

Stay tuned! Video recordings of the conference sessions will be available in June. In the meantime, check out our YouTube channel for past conference recordings.

RNIB Connect Radio attended our #bbsconf2025 where they interview Professor Phil Beales, Dr Elizabeth Forsythe and also our Chair Emma Hughes.

You can listen to the BBS UK Annual Conference 2025 playlist for free at anytime through the RNIB Connect Radio website.

audioboom.com/playlists/4635743-bbsuk-annual-conference-2025

Stay tuned! Video recordings of the conference sessions will be available in June. In the meantime, check out our YouTube channel for past conference recordings.
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🎉 Want to help raise money for BBS UK? 🎉 

Want to make a real difference for people living with #BardetBiedlSyndrome? It’s easy — set up your own JustGiving fundraising page in just a few steps!  

Whether it’s a walk, bake sale, marathon, or something totally original — your fundraiser matters. Here’s how to get started: 

💙 Steps to create your JustGiving page: 

Visit our page: https://www.justgiving.com/lmbbs (link in the comments)

Click “Fundraise for us” 

Sign up for a free account or login to your existing account 

Choose whether your page is in memory of someone 

Select your activity type (e.g. walk, bake sale, challenge) 

Name your event – date is optional if it runs over multiple days 

Set your fundraising goal — whatever feels right for you 

Add a personal message — share why youre supporting BBS UK 

Add a photo or video (or keep the BBS UK logo) 

Review and click “Launch my page” 

Share it with your community 🫶 

All donations go directly to BBS UK to support people affected by BBS. 

Got questions? Drop us a message at admin@bbsuk.org.uk— we’re happy to help! 

Thank you to all of our community fundraisers!

🎉 Want to help raise money for BBS UK? 🎉

Want to make a real difference for people living with #BardetBiedlSyndrome? It’s easy — set up your own JustGiving fundraising page in just a few steps!

Whether it’s a walk, bake sale, marathon, or something totally original — your fundraiser matters. Here’s how to get started:

💙 Steps to create your JustGiving page:

Visit our page: www.justgiving.com/lmbbs (link in the comments)

Click “Fundraise for us”

Sign up for a free account or login to your existing account

Choose whether your page is in memory of someone

Select your activity type (e.g. walk, bake sale, challenge)

Name your event – date is optional if it runs over multiple days

Set your fundraising goal — whatever feels right for you

Add a personal message — share why you're supporting BBS UK

Add a photo or video (or keep the BBS UK logo)

Review and click “Launch my page”

Share it with your community 🫶

All donations go directly to BBS UK to support people affected by BBS.

Got questions? Drop us a message at [email protected]— we’re happy to help!

Thank you to all of our community fundraisers!
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📸 A shoutout to the guide dogs! #BBSConf2025

And finally, a special thank you to the wonderfully behaved guide dogs who assisted those attending the conference weekend. They certainly stole the hearts of some of our team!

📸 A shoutout to the guide dogs! #bbsconf2025

And finally, a special thank you to the wonderfully behaved guide dogs who assisted those attending the conference weekend. They certainly stole the hearts of some of our team!
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📸 Goal Ball UK – Sunday Morning Action! #BBSConf2025

Huge thanks to Kathryn Fielding from Goalball UK for an energetic and fun session learning the basics of Goalball at the BBS UK Annual Conference in Northampton! Such a great way to start our Sunday and to finish off the weekend with a bit of exercise 💪🏽

#BBSUK #BBSConf2025

📸 Goal Ball UK – Sunday Morning Action! #bbsconf2025

Huge thanks to Kathryn Fielding from Goalball UK for an energetic and fun session learning the basics of Goalball at the BBS UK Annual Conference in Northampton! Such a great way to start our Sunday and to finish off the weekend with a bit of exercise 💪🏽

#bbsuk #bbsconf2025
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📸 Family quiz and raffle on Saturday evening!

After the formal conference closed on Saturday and the children and young people came back from Drayton Manor, attendees had dinner and then gathered for a fun family quiz and raffle. We also put on a few films and brought arts and crafts for the children and young people to enjoy.

We were blown away by the generous donations to the raffle from everyone, including a very exciting 3-night stay at a luxury accessible holiday home. Thank you to everyone who donated and for purchasing raffle tickets. 

#BBSUK #BBSConf2025

📸 Family quiz and raffle on Saturday evening!

After the formal conference closed on Saturday and the children and young people came back from Drayton Manor, attendees had dinner and then gathered for a fun family quiz and raffle. We also put on a few films and brought arts and crafts for the children and young people to enjoy.

We were blown away by the generous donations to the raffle from everyone, including a very exciting 3-night stay at a luxury accessible holiday home. Thank you to everyone who donated and for purchasing raffle tickets.

#bbsuk #bbsconf2025
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📸 Adult social event at #bbsconf2025 

On the Friday evening of conference, we held two sessions for adults living with BBS, designed to welcome new attendees, break the ice over fun games, and encourage conversation and laughter. We definitely had some laughs at one table where during the guess the smell game, we mistakenly guessed the smell was cheese when it was actually coconut!

We also spent some time thinking about what we would like to do in the future, big or small. These ranged from going on holiday, to learning braille, to continue making cups of tea independently. 

Thank you to our volunteer Maria Dowswell who hosted these sessions, and really helped to create a fun and easy-going atmosphere for our #VI adults!

📸 Adult social event at #bbsconf2025

On the Friday evening of conference, we held two sessions for adults living with BBS, designed to welcome new attendees, break the ice over fun games, and encourage conversation and laughter. We definitely had some laughs at one table where during the "guess the smell" game, we mistakenly guessed the smell was cheese when it was actually coconut!

We also spent some time thinking about what we would like to do in the future, big or small. These ranged from going on holiday, to learning braille, to continue making cups of tea independently.

Thank you to our volunteer Maria Dowswell who hosted these sessions, and really helped to create a fun and easy-going atmosphere for our #VI adults!
... See MoreSee Less

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