@bbs__uk

UK Charity, supporting people with Bardet-Biedl syndrome, their families, and their carers. Registered Charity Number 1181244.

 United Kingdom
linktr.ee/bardetbiedlsyndromeuk
Joined February 2014
  • Tweets990
  • Following464
  • Followers519
283Media
Bardet-Biedl Syndrome UK (BBS UK) retweeted
Kidney Care UK @kidneycareuk.bsky.social@kidneycareukFeb 15
🌙 Ramadan begins this week & if you’re living with kidney disease & thinking about fasting, it’s important to speak with your kidney doctor beforehand. Fasting is a personal decision, but your health & safety should always come first. Find out more 👉 kidneycareuk.org/get-support…
Blue poster with the Kidney Care UK logo. Text reads: "Fasting during Ramadan with kidney disease." Silhouette of mosque structures at the bottom.

ALT Blue poster with the Kidney Care UK logo. Text reads: "Fasting during Ramadan with kidney disease." Silhouette of mosque structures at the bottom.

The image is an informative graphic featuring a blue background with a cityscape silhouette at the bottom, including minarets and domes. The text discusses the impact of fasting during Ramadan on hydration and glucose levels, which are important for kidney health. It advises that those with kidney disease are exempt from fasting but may find the decision difficult. It also mentions research indicating some with early-stage kidney disease might fast safely. The Kidney Care UK logo is present in the lower right corner.

ALT The image is an informative graphic featuring a blue background with a cityscape silhouette at the bottom, including minarets and domes. The text discusses the impact of fasting during Ramadan on hydration and glucose levels, which are important for kidney health. It advises that those with kidney disease are exempt from fasting but may find the decision difficult. It also mentions research indicating some with early-stage kidney disease might fast safely. The Kidney Care UK logo is present in the lower right corner.

This image is a poster about the British Islamic Medical Association (BIMA) Ramadan Compendium. It highlights that the compendium offers free, peer-reviewed guidance on kidney disease and fasting, which can be discussed with a healthcare team. The message emphasizes consulting with a healthcare team if one has kidney disease before fasting. The poster includes the Kidney Care UK logo at the bottom. The background features a silhouette of minarets against a twilight sky.

ALT This image is a poster about the British Islamic Medical Association (BIMA) Ramadan Compendium. It highlights that the compendium offers free, peer-reviewed guidance on kidney disease and fasting, which can be discussed with a healthcare team. The message emphasizes consulting with a healthcare team if one has kidney disease before fasting. The poster includes the Kidney Care UK logo at the bottom. The background features a silhouette of minarets against a twilight sky.

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We’re really pleased to share our new booklet, BBS UK: How Can We Help? It’s a simple guide to the support we offer, useful for professionals involved in care and for our brilliant fundraisers to show what donations support. Read it here: Publications - BBS UK
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"Happy New Year to the BBS community! It's been a fantastic 2025, filled with incredible in-person moments like our annual conference in Northampton and our Ireland Information Day in Dublin.
Collage of photos against a yellow background. Text reads " BBS UK's 2025. Thank you to our supporters."

ALT Collage of photos against a yellow background. Text reads " BBS UK's 2025. Thank you to our supporters."

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And our Friends who donate monthly, a special thank you as your regular donations enable us to know month in month out what we're working with so we can plan for the future.
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Thank you to our trustees and volunteers for dedicating your time, energy and expertise to our charity. We couldn't do it without you! Goodbye to 2025, you've been amazing. And welcome 2026; here we come!
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Happy holidays everyone! Our staff and trustees are taking a well-deserved break and will be back in January ready to continue our important work supporting people with BBS and their families.
BBS UK logo inside a circle with cartoon reindeer antlers on top of it. There is a wrapped present in the bottom right and some holly in the bottom left.

ALT BBS UK logo inside a circle with cartoon reindeer antlers on top of it. There is a wrapped present in the bottom right and some holly in the bottom left.

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🎄If you’re able, we’d love your support to help us continue our vital work with the BBS community into the year ahead. There are lots of meaningful ways to give: ✨ Become a Friend of BBS UK ✨ Make a one-off donation ✨ Leave a legacy
Red line drawing of a tree with a star on top. BBS UK logo in a round button on the bottom right. Text reads "Support the BBS Community. Your generosity ensure we can help people living with BBS all year round. Become a Friend and give monthly. Donate a one-off gift. Leave a legacy gift."

ALT Red line drawing of a tree with a star on top. BBS UK logo in a round button on the bottom right. Text reads "Support the BBS Community. Your generosity ensure we can help people living with BBS all year round. Become a Friend and give monthly. Donate a one-off gift. Leave a legacy gift."

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You can find all of these giving options on our Support Us page: 👉 bbsuk.org.uk/support-us/ Thank you for being part of our community, and for helping us make a difference this Christmas 💙

Support Us - BBS UK

Be it donating to participate in a Fancy Dress Friday, or taking on a challenge event as a team to fundraise for BBS UK, there are tons of ways that your work

bbsuk.org.uk
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Free online workshop for adult BBS UK clinics patients 🗓️ 18 Nov 2025 | 🕖 7–8:30pm | 💻 Zoom Explore emotional wellbeing, anxiety, & coping strategies with @RaremindsUK counsellor Rebecca Hargreaves. 📧 Book now: [email protected] #BBS #BardetBiedlSyndrome #RareCondition
Information flyer for the Living with BBS: You and Your Emotional Wellbeing online workshop.

ALT Information flyer for the Living with BBS: You and Your Emotional Wellbeing online workshop.

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Congratulations to Tonia, Luke, Bilaal and Octavia for completing the #London10k on Sunday! All donations to BBS UK go directly to the running of the charity, helping to support people with #BardetBiedlSyndrome Check out our website for more information 💙
A man with a walking cane is participating in a race. He is holding onto the arm of another man. There are runners in the background.

ALT A man with a walking cane is participating in a race. He is holding onto the arm of another man. There are runners in the background.

Two people are wearing BBS UK t-shirts and holding the medals around their necks.

ALT Two people are wearing BBS UK t-shirts and holding the medals around their necks.

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It's #BBSGlobalDay this Saturday! Here at BBS UK, we're excited to come together with the global BBS community to raise awareness, raise funds and support research into #BardetBiedlSyndrome. At 3:30pm, you can join the international BBS community for a free online webinar.
Poster showing a map of the world with pinpoints on various countries. The BBS UK logo is in the bottom left and a QR code on the bottom right. Text gives information about the BBS Global Day

ALT Poster showing a map of the world with pinpoints on various countries. The BBS UK logo is in the bottom left and a QR code on the bottom right. Text gives information about the BBS Global Day

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You'll hear from speakers such as our very own Professor Philip Beales, as well as Professor Arlene Drack who spoke at last year's BBS UK annual conference. Follow the link to register for the free online webinar: us02web.zoom.us/webinar/regi…
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This is your chance to share your experience of #BardetBiedlSyndrome!
Manchester Rare Conditions Centre@mft_iMRare21 Aug 2025
Share Your Story. Shape the Future. If you or a family member has experience with a rare condition, your voice can drive better research and care. Join the Northwest We R Rare Patient, Family & Carer Steering Group today! shorturl.at/z9mV9 #RareConditions #PatientVoice
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Bardet-Biedl Syndrome UK (BBS UK) retweeted
PKD Charity UK
@PKDCharity3 Sep 2025
🩺 All kidney disease is serious, placing a heavy burden on patients, families, and the NHS. 💜 Polycystic kidney disease (PKD) has its own distinct challenges, and better understanding can lead to earlier diagnosis, improved care, and stronger research. 🔄 Repost to spread awareness! bit.ly/AboutPKD @kidneycareuk @Kidney_Research @NKF_UK @KidneyWales @UKKidney @PophamKidney
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Bardet-Biedl Syndrome UK (BBS UK) retweeted
Contact
@contactfamilies30 Jul 2025
📣 Views wanted on SEN units in mainstream schools in England 📣  The Department for Education is asking for parent carers’ views on Special Educational Needs (SEN) units and resource bases in mainstream schools. The survey is open until Wednesday 13 August and takes around 20 minutes to complete. SEN units can offer vital support for disabled children and those with additional needs – but when they’re not properly funded or integrated, they risk becoming segregated from the wider school. We’d love to hear from you too! Contact is running online focus groups in August and September to capture families’ experiences of SEN units.  Have your say: 📝 Take the DfE survey here: f.mtr.cool/qeugyqoyjm 💻 Book onto one of our focus groups here: f.mtr.cool/cpxvaaabxl 👀 Read more: f.mtr.cool/cygapiosqv
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🌟 Mum Dianne Garrett shares her story of raising her son with #BardetBiedlSyndrome in Exceptional Times. 💙 Stories of autism, rare disease, & a Cincinnati barber creating joyful moments for kids with disabilities. Read it here: shorturl.at/gEFJl Thanks @ParentCenterHub
Parent Center Hub@parentcenterhub4 Jul 2025
2025 2nd Quarter #ExceptionalTimes Digital Magazine, from Families Helping Families of Greater New Orleans- Louisiana PTI insights on developing emergency plans in #IEPs, navigating #MentalHealthDiagnoses, life with #BardetBiedlSyndrome & more canva.com/design/DAGqcMTH7mM…
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