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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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
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Alexandra Perovic started crowdfunding
Leave a message of support
Feb 1, 2020
Srećan rođendan! I još jednom svaka čast na ogromnom radu i uspjehu. Xx
Jan 31, 2020
Srećan rodjendan, draga Sanja.Tvom timu u Srbiji želim puno uspeha.
Jan 31, 2020
Jan 30, 2020
Jan 30, 2020
You are a saint! x
Nov 21, 2019
Amazing work you are doing Alexandra. Keep it up
Oct 18, 2019
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