World Spina Bifida and Hydrocephalus Day was established and designated by the International Federation for Spina Bifida and Hydrocephalus’ (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.
IF states that thanks to the continuous advances in medicine, healthcare services have significantly improved for people with spina bifida and hydrocephalus.
Unfortunately, IF points out that 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. Also, people are not aware of the conditions 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 25th October 2012, at the European Parliament in Strasbourg. IF members from all over the world made this event, which was supported by the World Health Organisation (WHO) a great success.
The following year, 25th October 2013, IF celebrated the launch of the PUSH platform and met at the European Parliament in Brussels to discuss the importance of access to healthcare. This debate was continued by IF 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.
Last year IF celebrated WSBHD by an action connected to the mental health of people with these conditions.
This year to celebrate the World Spina Bifida and Hydrocephalus Day on Thursday, 25th October 2018, IF collected testimonies from people living with these conditions.
This year’s topic is ‘Spina Bifida and Hydrocephalus throughout the lifespan’ and IF is sharing people’s stories from all regions of the world to share experiences, obstacles and good practices, from childhood to adulthood.
You are welcome to join in the conversation on World Spina Bifida Hydrocephalus Day by leaving a comment her, or join in and follow the conversation on social media @SBHIreland and @ifsbh
#wsbhd18 #mysbhilife #sbhiawarenessweek #spinabifida #hydrocephalus.