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!
In 2020, due to the COVID-19 pandemic that did not allow any in-person meetings the International Federation for Spina Bifida and Hydrocephalus (IF) has organised the first ever international webinar for WSBHD. This webinar involved panelists from every country chapter, and discussions around the progress which has been achieved so far and ambitions for the future of the global SBH community were conducted. IF also launched the #HappyWSBHD challenge on social media, it is possible to find testimonies from individuals with SBH and messages for WSBHD by searching for the hashtags #HappyWSBHD and #WSBHD20 on Facebook and Twitter.
In 2021, the International Federation for Spina Bifida and Hydrocephalus (IF) together with worldwide members led an impactful awareness raising campaign on social media under the theme of “Unlock Your Right to Health”. On this occasion, IF organised the second international webinar with panelists from around the world. IF Member Associations set examples of successful and diverse campaigns such as advocacy activities on social media, advocacy in national parliaments, musical concerts, local conferences with healthcare professionals, experts and persons with Spina Bifida and/or Hydrocephalus and their families.
Our vision is a society that guarantees the human rights of children and adults with Spina Bifida and Hydrocephalus (SBH), and celebrates their contributions in all areas of life, while guaranteeing equity at all levels and for all.
The UNCRPD represents a major milestone in the continued advancement of the rights of persons with disabilities. The convention outlines the human rights and fundamental freedoms of persons with disabilities and the obligations of States Parties to the UNCRPD to advance and protect those rights.
Accessibility and inclusion are challenges frequently encountered by persons with SBH. With stigma, discrimination and lack of awareness creating further barriers to the full enjoyment of life. Therefore, IF shares with you the theme for the World Spina Bifida and Hydrocephalus Day 2022: “Elevate Your Voice”.
Join IF in elevating your voice!
For this year's celebration, IF has prepared posters, messages, a Talent Show and testimonial videos! Find out more on the '2022 THEME' page.