Bardet-Biedl Syndrome UK
Bardet-Biedl Syndrome UK
  • Видео 162
  • Просмотров 28 115

Видео

Introduction to BBS - Dr Shehla Mohammed - BBS UK Conference 2024
Просмотров 100Месяц назад
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
Просмотров 66Месяц назад
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
Просмотров 67Месяц назад
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
Просмотров 123Месяц назад
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
Просмотров 108Месяц назад
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
Просмотров 95Месяц назад
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
Просмотров 55Месяц назад
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
Просмотров 27Месяц назад
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
Просмотров 51Месяц назад
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
Просмотров 31Месяц назад
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
Просмотров 34Месяц назад
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
Просмотров 79Месяц назад
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
Просмотров 119Месяц назад
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
Просмотров 141Месяц назад
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
Просмотров 68Месяц назад
Welcome - Laura Dowswell - BBS UK Conference 2024
Contact details - BBS UK Spring 2024 newsletter
Просмотров 22Месяц назад
Contact details - BBS UK Spring 2024 newsletter
BBS UK Out and About - BBS UK Spring 2024 newsletter
Просмотров 20Месяц назад
BBS UK Out and About - BBS UK Spring 2024 newsletter
Cilia Conference 2024 - BBS UK Spring 2024 newsletter
Просмотров 15Месяц назад
Cilia Conference 2024 - BBS UK Spring 2024 newsletter
Research Round Up - BBS UK Spring 2024 newsletter
Просмотров 15Месяц назад
Research Round Up - BBS UK Spring 2024 newsletter
Sicilian Adventure - BBS UK Spring 2024 newsletter
Просмотров 10Месяц назад
Sicilian Adventure - BBS UK Spring 2024 newsletter
VI Mentoring with LOOK - BBS UK Spring 2024 newsletter
Просмотров 11Месяц назад
VI Mentoring with LOOK - BBS UK Spring 2024 newsletter
VI Cricket and Representing England at the IBSA World Games - BBS UK Spring 2024 newsletter
Просмотров 4Месяц назад
VI Cricket and Representing England at the IBSA World Games - BBS UK Spring 2024 newsletter
Healthy Eating Workshops - BBS UK Spring 2024 newsletter
Просмотров 22Месяц назад
Healthy Eating Workshops - BBS UK Spring 2024 newsletter
Ireland Regional Group’s Meetup in Dublin - BBS UK Spring 2024 newsletter
Просмотров 12Месяц назад
Ireland Regional Group’s Meetup in Dublin - BBS UK Spring 2024 newsletter
Medical Information Booklet Review - BBS UK Spring 2024 newsletter
Просмотров 9Месяц назад
Medical Information Booklet Review - BBS UK Spring 2024 newsletter
Service User Advisory Group - BBS UK Spring 2024 newsletter
Просмотров 8Месяц назад
Service User Advisory Group - BBS UK Spring 2024 newsletter
Are you a Member of BBS UK? - BBS UK Spring 2024 newsletter
Просмотров 10Месяц назад
Are you a Member of BBS UK? - BBS UK Spring 2024 newsletter
Annual Conference - BBS UK Spring 2024 newsletter
Просмотров 21Месяц назад
Annual Conference - BBS UK Spring 2024 newsletter
Social Care Student Visit to Great Ormond Street Hospital - BBS UK Spring 2024 newsletter.
Просмотров 11Месяц назад
Social Care Student Visit to Great Ormond Street Hospital - BBS UK Spring 2024 newsletter.

Комментарии

  • @datogunashvili6569
    @datogunashvili6569 24 дня назад

    Brao❤❤❤

  • @MeMe-jc7if
    @MeMe-jc7if 28 дней назад

    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 Месяц назад

    Great start to the conference Tonia.

  • @togetherwerise2893
    @togetherwerise2893 Месяц назад

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

  • @griseldazambrano2399
    @griseldazambrano2399 Месяц назад

    Hola buenas tardes me interesa pero no hablo ongles

  • @griseldazambrano2399
    @griseldazambrano2399 Месяц назад

    Puede verse en español o con subtitulos?

    • @bardet-biedlsyndromeuk2209
      @bardet-biedlsyndromeuk2209 Месяц назад

      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 3 месяца назад

    What’s the name of the speaker please!

  • @carolinafuentes994
    @carolinafuentes994 3 месяца назад

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

  • @denisetitchgregory5867
    @denisetitchgregory5867 8 месяцев назад

    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 8 месяцев назад

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

  • @nate7629
    @nate7629 Год назад

    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 Год назад

    😂 𝓅𝓇𝑜𝓂𝑜𝓈𝓂

  • @sanasanaafridi7235
    @sanasanaafridi7235 2 года назад

    how to treat bbs children

  • @user-qu5py6nw2h
    @user-qu5py6nw2h 2 года назад

    ممكن الفيديو مترجم عربي

  • @toty907
    @toty907 2 года назад

    Is everyone with BBS lose the vision??

  • @milamommy5759
    @milamommy5759 3 года назад

    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 года назад

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

  • @sangitaghule9298
    @sangitaghule9298 3 года назад

    Can you help my child she is having bbs

  • @sangitaghule9298
    @sangitaghule9298 3 года назад

    Nice

  • @MrMehdikamal
    @MrMehdikamal 3 года назад

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

  • @pk-ow9xl
    @pk-ow9xl 3 года назад

    Can autism start at age 4?

  • @icescreamer6693
    @icescreamer6693 3 года назад

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

    • @baigubair7790
      @baigubair7790 2 года назад

      Trust in God. He is the most Merciful.

  • @icescreamer6693
    @icescreamer6693 3 года назад

    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 года назад

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

  • @misterB2231
    @misterB2231 4 года назад

    laurence moore biedl bardet

  • @madansharma6304
    @madansharma6304 4 года назад

    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 года назад

    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 года назад

    God bless u all putting efforts for our children future.

  • @kpsentv8717
    @kpsentv8717 4 года назад

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

  • @kpsentv8717
    @kpsentv8717 5 лет назад

    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 лет назад

    Thank you so much, Aneeba!!

  • @zahidaafsar9932
    @zahidaafsar9932 5 лет назад

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

  • @WilCin
    @WilCin 7 лет назад

    Great progress