30 April 2024
The upcoming 30th International Conference for Spina Bifida and Hydrocephalus will take place on October 24-26 in Kuala Lumpur, Malaysia. It is an anniversary conference and a great opportunity for youth to be visible, meet other young people around the world, present the youth work on an international stage, interact with healthcare professionals, scientists, policymakers, and develop new networks. Support our youth to participate!
24 April 2024
Technology has always played an important role in facilitating the mobility and accessibility for persons with disabilities, including the global Spina Bifida and Hydrocephalus (SBH) community. Now more than ever people and communities are becoming increasingly reliant on technologies for various aspects of private and public life, including in education.
27 February 2024
In this article the IF President Cato Lie interviewed paralympic gold medalist Jesper Pedersen. In the interview Cato and Jesper talked about the barriers and opportunities to achieve their ambitions and live a fulfilling life with SBH. A topic which is worth reading by both people with SBH and those without. The interview includes advice for people with SBH and demonstrates the physical and social barriers which they have encountered. Barriers which society as a whole needs to recognise and dismantle.
27 February 2024
IF joined the #ZeroCon24 in its mission to ensure zero barriers towards education. IF's Secretary General Dr Sylvia Roozen provided an Impulse Statement and moderated a session whereby Zero Project Awardees among others focussed on proven solutions that support disabled individuals in remote areas, focusing on early disorder detection and assistive devices. The session is broadcasted from the United Nations Office in Vienna, Austria.
12 January 2024
Each year in January the International Federation for Spina Bifida and Hydrocephalus (IF), together with partners across the world, celebrates the World Folic Acid Awareness Week (WFAAW). The WFAAW is a part of the IF Global Prevention Initiative (IFGPI), a campaign to raise awareness on how to reduce the prevalence of Neural Tube Defects (NTDs) including Spina Bifida and Hydrocephalus, by promoting policies and actions to ensure that all pregnancies begin with enough folate to support the development of the foetus. By advocating for access to staple foods fortified with folic acid, folic acid supplements and foods rich in folate for all.
10 December 2023
10 December 2023, Sunday | 11:15 – 12:30 GMT | Health Pavilion, Blue Zone, Thematic Arena 2, Building 89, Food and Health, Upper floor, Expo City Dubai
6 December 2023
With a new IF statement, IF stands as a precursor with its long-time focus on rehabilitation. Indeed, almost thirty years ago, IF contacted the World Health Organization and proposed to work together for producing a guide for mid-level rehabilitation workers, to be used for children with Spina Bifida and Hydrocephalus (SBH).
6 December 2023
In an upcoming statement, IF calls for a greater awareness and urgent action towards the needs of persons with Spina Bifida and Hydrocephalus (SBH) in time of conflict and humanitarian crisis. According to the Office of the High Commissioner for Human Rights (OHCHR), a humanitarian crisis includes man-made conflict, natural disasters or pandemics – or all of them. This raises concerns on human-rights and exacerbate pre-existing human rights vulnerabilities, especially for persons with disabilities.
6 November 2023
On November 6 2023, Dr Sylvia Roozen - Secretary General of the International Federation for Spina Bifida and Hydrocephalus emphasised in her keynote address the important role ICBDSR members have on surveillance research to inform NTD Prevention & Care.
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