HOW DID IT START
The World Spina Bifida and Hydrocephalus Day has been established and designated by IF's General Assembly in Guatemala 2011 with the aim of raising awareness and understanding about Spina Bifida and Hydrocephalus. It serves also as means to advocate and promote the rights of persons with these conditions.
WHY YOU SHOULD GET INVOLVED
Thanks to the continuous advances in medicine, healthcare services have significantly improved for people with Spina Bifida and Hydrocephalus. Unfortunately, many children and adults living with Spina Bifida and Hydrocephalus still do not have access to the right treatment and care services and stigma and discrimination remain a reality in many countries. Besides, people are not aware of Spina Bifida and Hydrocephalus and ways to prevent neural tube defects.
The World Spina Bifida and Hydrocephalus Day was held for the first time on 25 October 2012 at the European Parliament in Strasbourg. Supported by the WHO, IF members from all over the world made this event a great success. On 25 October 2013 we celebrated the launch of our PUSH platform and met at the European Parliament in Brussels to discuss the importance of access to healthcare. This debate continued in 2014 and 2015 with campaigns and events all over the world. In 2016 the International Federation for Spina Bifida and Hydrocephalus together with the Flemish Association for Spina Bifida and Hydrocephalus (VSH), Ghent University, and the Ghent University Hospital (UZ Gent) organised the 27th International Conference on Spina Bifida and Hydrocephalus, Turning Points. One of the highlights of this event was the official launch by HRH Princess Astrid of Belgium of the Global Prevention Initiative. In 2017 the International Federation for Spina Bifida and Hydrocephalus celebrated WSBHD by an action connected to the mental health of people with these conditions.
The 7th edition of WSBHD celebrated in 2018 was a great success thanks to the strong engagement of the SBH community: IF collected more than 60 testimonies both from people with SBH and their families and share them on social media using the hashtag #mySBHlife. We really encourage you to check the written testimonies and the videos!
In 2019, IF celebrated the WSBHD together with IF's 40th anniversary, the SBH community had a double celebration! We encourage you to watch the interviews of the 3 former IF's presidents and the material and activities developed for WSBHD 2020 by our members!
The right to health in accordance with article 25 of the UNCRPD is a high priority for IF and the global SBH community. Access to timely diagnosis, to information, treatment and multidisciplinary care is still unattainable for many in the global SBH community. With stigma, discrimination and lack of awareness creating further barriers to the enjoyment of the highest attainable standard of health. The barriers may vary between communities and individuals but the goal of advancing the right to health for all individuals with SBH remains the same. Therefore, IF shares with you the theme for the World Spina Bifida and Hydrocephalus Day 2021 is “Unlock your Right to Health”.
Join IF in unlocking the right to health!