26 September 2016 // IF is looking for national and regional Spina Bifida and/or Hydrocephalus associations from all over the world to expand its membership. By working together and through the exchange of knowledge and experiences, we can help each other to improve the quality of life of people with Spina Bifida and Hydrocephalus and their families, and we can reduce the prevalence of neural tube defects and hydrocephalus by primary prevention.
Does your organisation support the mission and goals of IF, is your organisation open to all people with Spina Bifida and/or Hydrocephalus and their families within its territory, is your organisation officially recognised in your country? Download the IF Membership Application Form and join the International Federation for Spina Bifida and Hydrocephalus (IF) now to become a stronger advocate for the rights of persons with SBH and their families!
19 September 2016 // As many of you might already know, IF will soon be launching its exciting new Global Prevention Initiative (GPI), which will be officially launched by HRH Princess Astrid of Belgium, at the IF Turning Points conference in October.
The GPI is the first initiative of its kind, that aims to tackle the primary prevention of Neural Tube Defects and Hydrocephalus as a united global community. By joining forces and addressing the issue together, we can support sustainable action and awareness on a global level, to maximise the prevention of these disabilities. We will help to support all IF members, and WHO member states in developing regional and national plans for the implementation of effective interventions to prevent birth defects, including the development and delivery of effective prevention initiatives and food fortification strategies, in line with the aims of the WHO.
16 September 2016 // If you are an adult with spina bifida, researchers at Indiana University School of Medicine want to hear from you! They are interested in learning more about the sexual health of adults with spina bifida worldwide. If you are 18 or older and have spina bifida, you can participate, whether or not you ever had sex. The survey is only available in English. You will be asked questions about your background, your experiences with spina bifida, and your sexuality (feelings about sex, sexual behaviors, and desires for a family). The online survey takes only 15-20 minutes.
All your answers are confidential and completely anonymous. No one you know will see your answers. Even the researchers will not be able to identify who you are or your answers. You can withdraw from the study at any time. To go to the survey, go to this link: https://goo.gl/NocVRR