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Bardet-Biedl Syndrome UK
Registrace 8. 06. 2015
Bardet-Biedl Syndrome UK is the only registered charity supporting people with Bardet-Biedl Syndrome, their families, and carers in the UK. We are a user-led organisation, represented by adults with Bardet-Biedl Syndrome (BBS) and parents of children with BBS.
Our aims are ‘to preserve and protect the health and promote the welfare of persons who have BBS and to advance the education of the medical and educational professionals and the public about BBS’.
We support over 640 people diagnosed with BBS, their parents, carers, and siblings as well as professionals involved in all aspects of the care and support of people with BBS in the UK.
Further information can be found at www.bbsuk.org.uk
Our aims are ‘to preserve and protect the health and promote the welfare of persons who have BBS and to advance the education of the medical and educational professionals and the public about BBS’.
We support over 640 people diagnosed with BBS, their parents, carers, and siblings as well as professionals involved in all aspects of the care and support of people with BBS in the UK.
Further information can be found at www.bbsuk.org.uk
Respiratory Ciliopathy and BBS - Prof Claire Hogg - BBS UK Conference 2024
Professor Claire Hogg's presentation on 'Respiratory Ciliopathy and BBS' at the BBS UK Conference 2024 on Saturday 8th June 2024.
zhlédnutí: 85
Video
Introduction to BBS - Dr Shehla Mohammed - BBS UK Conference 2024
zhlédnutí 85Před 24 dny
Dr Shehla Mohammed's 'Introduction to BBS' presentation from the BBS UK Conference on 8th June 2024.
Closing remarks Laura Dowswell - BBS UK Conference 2024
zhlédnutí 63Před 27 dny
Laura Dowswell closes the BBS UK 2024 Annual Conference with thanks to panellists and attendees on Saturday 8th June 2024.
Q&A with Dr Elizabeth Forsythe, Dr Arlene Drack, Dr Shehla Mohammed and Prof Phil Beales
zhlédnutí 57Před 27 dny
A Q&A session with Dr Elizabeth Forsythe, Dr Arlene Drack, Dr Shehla Mohammed and Prof Phil Beales at the BBS UK Conference 2024 on Saturday 8th June 2024.
BBS Gene Therapy & Clinical Trials - Dr Arlene Drack - BBS UK Conference 2024
zhlédnutí 113Před 27 dny
Dr Arlene Drack's presentation on 'BBS Gene Therapy & Clinical Trials' from the BBS UK Conference 2024 on Saturday 8th June 2024.
Update on Setmelanotide - Dr Elizabeth Forsythe - BBS UK Conference 2024
zhlédnutí 96Před 27 dny
Dr Elizabeth Forsythe's 'Update on Setmelanotide' presentation at the BBS UK Conference 2024 on Saturday 8th June 2024.
A Journey of Resilience and Triumph - Bilaal Ali - BBS UK Conference 2024
zhlédnutí 90Před 27 dny
Bilaal Ali shares his personal perspective of living with BBS during the BBS UK Conference 2024 on Saturday 8th June 2024.
Irritable Bowel Syndrome IBS and BBS - Kelly Slater - BBS UK Conference 2024
zhlédnutí 48Před 27 dny
Kelly Slater's presentation on Irritable Bowel Syndrome IBS and BBS at the BBS UK Annual Conference 2024 on Saturday 8th June 2024.
Fundraising Roundup - Samantha Serido - BBS UK Conference 2024
zhlédnutí 22Před 27 dny
Samantha Serido gives a Fundraising Roundup for the BBS UK Conference 2024 on Saturday 8th June 2024.
Artificial Intelligence for Accessibility - Hector Minto - BBS UK Conference 2024
zhlédnutí 47Před 27 dny
Hector Minto from Microsoft shares his presentation on Artificial Intelligence for Accessibility at the BBS UK Conference 2024 on 8th June 2024.
Sibling Q&A - Greg Dowswell and Clare Kassa - BBS UK Conference 2024
zhlédnutí 29Před 27 dny
Greg Dowswell and Clare Kassa answer questions about supporting siblings of people with BBS from the attendees at the BBS UK Conference 2024 on 8th June 2024.
Supporting Siblings - Clare Kassa - BBS UK Conference 2024
zhlédnutí 31Před 27 dny
Clare Kassa from the charity Sibs gives her presentation on Supporting Siblings with rare conditions at the BBS UK Conference 2024 on 8th June 2024.
A Sibling's Perspective - Greg Dowswell - BBS UK Conference 2024
zhlédnutí 72Před 27 dny
Greg Dowswell shares his personal perspective as a sibling of someone with the rare syndrome Bardet-Biedl syndrome (BBS) at the BBS UK Annual Conference on Saturday 8th June 2024
Q&A - Prof Phil Beales, Dr Shehla Mohammed and Prof Claire Hogg - BBS UK Conference 2024
zhlédnutí 116Před 27 dny
Q&A session with Prof Phil Beales, Dr Shehla Mohammed and Prof Claire Hogg at the BBS UK Conference 2024 on Saturday 8th June.
Update on Research and Study of BBS - Prof Phil Beales - BBS UK Conference 2024
zhlédnutí 122Před 27 dny
Prof Phil Beales shares his 'Update on Research and Study of BBS' presentation at the BBS UK Conference 2024 on 8th June 2024.
Brao❤❤❤
Can you give me more information about gene therapy & RP. I have a 28 year old daughter with BBS & would like to know if there is anything that can help her.
Great start to the conference Tonia.
Thank you for sharing your story Bilaal. What an incredible and inspiring young man you are 😊
Hola buenas tardes me interesa pero no hablo ongles
Puede verse en español o con subtitulos?
Hola. I'm sorry but we do not offer subtitles in different languages. The English text can be found on our website, and then you can put this into an online translator. Here is the link to our newsletter on our website: bbsuk.org.uk/bbs-uk-publications/#bbs-newsletters Gracias
What’s the name of the speaker please!
You are amazing, funny and brilliant. Thank you for sharing.
My brother has BBS, he was diagnosed during the early 80's. He suffered with 'night' blindness from a young age then lost his vision completely by the age of 14 to RP. In 2020 he began renal dialysis, due to his social anxiety my partner and I are being trained to home dialyse him. He is 52 this coming January and coping with dialysis remarkably and thankfully on the transplant list :)
Thank you for sharing, very informative and heart felt. I wish all the very best for your family ❤
Is this only a direct treatment for people whom have increased hunger from antipsychotic medications or will it combat hunger achieved through other means of weight gain through the same or other antipsychotics. For example if it shuts down the metabolic part of your brain from certain antipsychotics will it directly counter that? Ty so much
😂 𝓅𝓇𝑜𝓂𝑜𝓈𝓂
how to treat bbs children
ممكن الفيديو مترجم عربي
Is everyone with BBS lose the vision??
We live on the beautiful island of Hawai’i & I sooooo little insight of this all .. she goes into surgery possibly December for a reconstruction.. I want to know if this is the right way to move?
I’ve been researching this day after day!! This is the latest video I can find
Can you help my child she is having bbs
Nice
hi i have a son and he is 16 years , he has BBS
Can autism start at age 4?
My girlfriend have BBS. Does she have to go blind someday?
Trust in God. He is the most Merciful.
My girlfriend have this syndrom, for now, she can't see the stars during the night, but im so afraid of what will happen to her in the future 😭😭 P.S. : she is 14 so the symptoms are not at their maximum...
You think this isn't real, well think of me, because I know of one who has it. :)
laurence moore biedl bardet
Any treatment of bbs any where in the word specially low vision and increasing wait ....mail id is m.sharma.madan@gmail.com
May Allah make life easier for you. I also have three children, one is 12 years old, younger son 10 and 8 year old daughter both suffer from syndrome.
God bless u all putting efforts for our children future.
Any latest update sir. I have 2 cute children affected by bbs.
Good work keep it up 'best wishes .i have two bbs affected children .here in my country no awareness and clinical support is avaiable .i got lot of information from this channel thanks
Which u r from
Thank you so much, Aneeba!!
An absolutely beautiful and brave young lady. Thank you for sharing your story. Keep your chin up 💗 very inspiring!
Great progress