Bardet-Biedl Syndrome UK
Bardet-Biedl Syndrome UK
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Відео

Introduction to BBS - Dr Shehla Mohammed - BBS UK Conference 2024
Переглядів 106Місяць тому
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
Переглядів 73Місяць тому
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
Переглядів 76Місяць тому
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
Переглядів 135Місяць тому
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
Переглядів 126Місяць тому
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
Переглядів 98Місяць тому
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
Переглядів 63Місяць тому
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
Переглядів 27Місяць тому
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
Переглядів 51Місяць тому
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
Переглядів 32Місяць тому
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
Переглядів 35Місяць тому
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
Переглядів 84Місяць тому
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
Переглядів 120Місяць тому
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
Переглядів 153Місяць тому
Prof Phil Beales shares his 'Update on Research and Study of BBS' presentation at the BBS UK Conference 2024 on 8th June 2024.
Welcome - Laura Dowswell - BBS UK Conference 2024
Переглядів 69Місяць тому
Welcome - Laura Dowswell - BBS UK Conference 2024
Contact details - BBS UK Spring 2024 newsletter
Переглядів 222 місяці тому
Contact details - BBS UK Spring 2024 newsletter
BBS UK Out and About - BBS UK Spring 2024 newsletter
Переглядів 212 місяці тому
BBS UK Out and About - BBS UK Spring 2024 newsletter
Cilia Conference 2024 - BBS UK Spring 2024 newsletter
Переглядів 162 місяці тому
Cilia Conference 2024 - BBS UK Spring 2024 newsletter
Research Round Up - BBS UK Spring 2024 newsletter
Переглядів 152 місяці тому
Research Round Up - BBS UK Spring 2024 newsletter
Sicilian Adventure - BBS UK Spring 2024 newsletter
Переглядів 102 місяці тому
Sicilian Adventure - BBS UK Spring 2024 newsletter
VI Mentoring with LOOK - BBS UK Spring 2024 newsletter
Переглядів 112 місяці тому
VI Mentoring with LOOK - BBS UK Spring 2024 newsletter
VI Cricket and Representing England at the IBSA World Games - BBS UK Spring 2024 newsletter
Переглядів 42 місяці тому
VI Cricket and Representing England at the IBSA World Games - BBS UK Spring 2024 newsletter
Healthy Eating Workshops - BBS UK Spring 2024 newsletter
Переглядів 222 місяці тому
Healthy Eating Workshops - BBS UK Spring 2024 newsletter
Ireland Regional Group’s Meetup in Dublin - BBS UK Spring 2024 newsletter
Переглядів 122 місяці тому
Ireland Regional Group’s Meetup in Dublin - BBS UK Spring 2024 newsletter
Medical Information Booklet Review - BBS UK Spring 2024 newsletter
Переглядів 92 місяці тому
Medical Information Booklet Review - BBS UK Spring 2024 newsletter
Service User Advisory Group - BBS UK Spring 2024 newsletter
Переглядів 82 місяці тому
Service User Advisory Group - BBS UK Spring 2024 newsletter
Are you a Member of BBS UK? - BBS UK Spring 2024 newsletter
Переглядів 102 місяці тому
Are you a Member of BBS UK? - BBS UK Spring 2024 newsletter
Annual Conference - BBS UK Spring 2024 newsletter
Переглядів 212 місяці тому
Annual Conference - BBS UK Spring 2024 newsletter
Social Care Student Visit to Great Ormond Street Hospital - BBS UK Spring 2024 newsletter.
Переглядів 122 місяці тому
Social Care Student Visit to Great Ormond Street Hospital - BBS UK Spring 2024 newsletter.

КОМЕНТАРІ

  • @Unow6b
    @Unow6b 18 годин тому

    Is it difficult to find a partner if you have BBS? I’m foreign myself and have BBS, my oldest sister? have found a man and have children, but I, who am a guy, have not been able to find a girl yet. because of my overweight, I have kidney failure and I see less than 1% in both eyes. Not only that my back is also bent.

  • @datogunashvili6569
    @datogunashvili6569 Місяць тому

    Brao❤❤❤

  • @MeMe-jc7if
    @MeMe-jc7if Місяць тому

    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.

  • @tazeemabbas
    @tazeemabbas Місяць тому

    Great start to the conference Tonia.

  • @togetherwerise2893
    @togetherwerise2893 Місяць тому

    Thank you for sharing your story Bilaal. What an incredible and inspiring young man you are 😊

  • @griseldazambrano2399
    @griseldazambrano2399 2 місяці тому

    Hola buenas tardes me interesa pero no hablo ongles

  • @griseldazambrano2399
    @griseldazambrano2399 2 місяці тому

    Puede verse en español o con subtitulos?

    • @bardet-biedlsyndromeuk2209
      @bardet-biedlsyndromeuk2209 2 місяці тому

      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

  • @carolinafuentes994
    @carolinafuentes994 4 місяці тому

    What’s the name of the speaker please!

  • @carolinafuentes994
    @carolinafuentes994 4 місяці тому

    You are amazing, funny and brilliant. Thank you for sharing.

  • @denisetitchgregory5867
    @denisetitchgregory5867 8 місяців тому

    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 :)

  • @tinagolden2649
    @tinagolden2649 9 місяців тому

    Thank you for sharing, very informative and heart felt. I wish all the very best for your family ❤

  • @nate7629
    @nate7629 Рік тому

    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

  • @danielgonzalo5059
    @danielgonzalo5059 Рік тому

    😂 𝓅𝓇𝑜𝓂𝑜𝓈𝓂

  • @sanasanaafridi7235
    @sanasanaafridi7235 2 роки тому

    how to treat bbs children

  • @user-qu5py6nw2h
    @user-qu5py6nw2h 2 роки тому

    ممكن الفيديو مترجم عربي

  • @toty907
    @toty907 2 роки тому

    Is everyone with BBS lose the vision??

  • @milamommy5759
    @milamommy5759 3 роки тому

    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?

  • @milamommy5759
    @milamommy5759 3 роки тому

    I’ve been researching this day after day!! This is the latest video I can find

  • @sangitaghule9298
    @sangitaghule9298 3 роки тому

    Can you help my child she is having bbs

  • @sangitaghule9298
    @sangitaghule9298 3 роки тому

    Nice

  • @MrMehdikamal
    @MrMehdikamal 3 роки тому

    hi i have a son and he is 16 years , he has BBS

  • @pk-ow9xl
    @pk-ow9xl 3 роки тому

    Can autism start at age 4?

  • @icescreamer6693
    @icescreamer6693 3 роки тому

    My girlfriend have BBS. Does she have to go blind someday?

    • @baigubair7790
      @baigubair7790 2 роки тому

      Trust in God. He is the most Merciful.

  • @icescreamer6693
    @icescreamer6693 3 роки тому

    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...

  • @989787777778787
    @989787777778787 3 роки тому

    You think this isn't real, well think of me, because I know of one who has it. :)

  • @misterB2231
    @misterB2231 4 роки тому

    laurence moore biedl bardet

  • @madansharma6304
    @madansharma6304 4 роки тому

    Any treatment of bbs any where in the word specially low vision and increasing wait ....mail id is m.sharma.madan@gmail.com

  • @kpsentv8717
    @kpsentv8717 4 роки тому

    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.

  • @kpsentv8717
    @kpsentv8717 4 роки тому

    God bless u all putting efforts for our children future.

  • @kpsentv8717
    @kpsentv8717 4 роки тому

    Any latest update sir. I have 2 cute children affected by bbs.

  • @kpsentv8717
    @kpsentv8717 5 років тому

    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

  • @cindyfelton4570
    @cindyfelton4570 5 років тому

    Thank you so much, Aneeba!!

  • @zahidaafsar9932
    @zahidaafsar9932 5 років тому

    An absolutely beautiful and brave young lady. Thank you for sharing your story. Keep your chin up 💗 very inspiring!

  • @WilCin
    @WilCin 7 років тому

    Great progress