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Alexandra Perovic raised £310 from 7 supporters

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Closed 03/10/2020

31%
£310
raised of £1,000 target by 7 supporters

    Weʼve raised £310 to raise awareness of Williams syndrome (WS) and help children and adults with WS receive adequate medical and educational support

    London, UK
    Funded on Saturday, 3rd October 2020

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    Story

    Williams syndrome (WS), a rare genetic disorder, is almost unknown in the countries of the former Yugoslavia, where I'm from. When visiting Serbia four years ago, I identified several adults at a special education facility who did not know they had WS and never got appropriate help for the medical issues that accompany WS, as the medical professionals were unaware of it. In 2017, I helped establish the first association for people with WS in the Balkans. Our team consists of volunteers who are medical doctors, teachers and students of special education and rehabilitation. I have met dozens of lovely children, young adults and their families from Serbia, Montenegro and Bosnia who rely on our support. In 2018, I completed a Couch to 5k training to raise money for 2 adults with WS and their carers to visit their first ever WS camp, organised in the UK, and attended by 500 families from the UK and Europe. See the list of our amazing suporters here.

    This year we organised the very first scientific seminar on the topic of WS, aimed at medical and education professionals, accredited by the Serbian Health Council, in Novi Sad, Serbia. Crucially, we invited families of children and adults with this rare disorder from Serbia and from neighbouring countries such as Montenegro, Bosnia and Croatia. By educating professionals about the acute health problems and needs specific to individuals with WS, we aim to raise awareness of WS, but also fight stigma associated with intellectual and physical disabilities that is unfortunately still very much prevalent in this part of the world. By getting the families together, where families from different parts of former Yugoslavia will maybe for the first time meet another child or adult with WS, we hope to create a community where people will share their experiences and support each other. The organisation of the seminar was supported by the European Federation for Williams syndrome (FEWS) and the European Organisation for Rare Diseas (EURORDIS), but we are hoping to reimburse the travel and accommodation costs of the families who have financial difficulties (UCL and Rotary Club Ulcinj have helped with the costs of families from Bosnia and from Montenegro).

    Please also support our future activities so that children and adults with WS finally get appropriate medical provision and educational opportunities they desperately need. We are now raising money to send 4 of our members and two carers to the summer camp in Frambu, Norway, a rare diseases centre. Please visit our webpage at https://www.vilijamsovsindrom.com

    THANK YOU!

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    Alexandra Perovic

    Updates appear here

      1 year ago

      Alexandra Perovic started crowdfunding

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      Page last updated on: 2/1/2020 11.15

      Supporters

      7

      • Anonymous

        Anonymous

        Feb 1, 2020

        Srećan rođendan! I još jednom svaka čast na ogromnom radu i uspjehu. Xx

        £20.00

      • Ana Peric

        Ana Peric

        Jan 31, 2020

        Srećan rodjendan, draga Sanja.Tvom timu u Srbiji želim puno uspeha.

      • Anonymous

        Anonymous

        Jan 31, 2020

      • Anonymous

        Anonymous

        Jan 30, 2020

      • Carla Hays

        Carla Hays

        Jan 30, 2020

        You are a saint! x

        £30.00

      • Petar

        Petar

        Nov 21, 2019

        Amazing work you are doing Alexandra. Keep it up

        £100.00

      • Ad Neeleman

        Ad Neeleman

        Oct 18, 2019

        £100.00

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      About Crowdfunding
      About the fundraiser
      Alexandra Perovic

      Alexandra Perovic

      London, UK

      Associate Professor in Clinical Linguistics at University College London.

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