Spina Bifida and Hydrocephalus support needed in Pakistan

Parents in Pakistan are in need of more information about Spina Bifida and Hydrocephalus treatment and care24 April 2014 // Various studies in Pakistan have shown that Spina Bifida and Hydrocephalus are among the most common birth defects in this country. While some hospitals do offer treatment, there are still cases in which surgery is withheld. For parents of newborns that do receive surgical intervention, little to no information is available about the essential follow-up care and support for their children. One parent, Muhammad Mudassir, father of a 3-year-old girl, has decided that it is time to improve this situation. He wishes to establish a non-profit organisation fully dedicated to Spina Bifida and Hydrocephalus in Pakistan. To explain the need for change, Muhammad has written an informative article which describes the current situation of Spina Bifida and Hydrocephalus in Pakistan. The article contains Muhammad's contact details for those interested in supporting him in his efforts to establish a Spina Bifida and Hydrocephalus association in Pakistan.

Spina Bifida and Hydrocephalus Partner Engagement Meeting


Beautiful Kamukama from Western Uganda, a thriving 13 year old with Spina Bifida, is one of the first children operated on by Dr Warf back in 200111 April 2014 // Key actors on spina bifida and hydrocephalus global arena assembled today in Boston, Massachusetts at the unprecedented event- Partner Engagement Meeting. IF is represented by its President Margo Whiteford and Secretary General Lieven Bauwens.

The main aim of this gathering is to engage in a forum to explore a strategic partnership and identify potential opportunities and synergies to strengthen global efforts for the prevention of spina bifida and hydrocephalus and care of people living with these conditions.

Discussions will tackle existing challenges and provide a forum for partner groups to share information on each organization’s priorities and current efforts. The potential for partner network collaboration and public health impact across our organizations will be optimized and synergistic opportunities will be identified.

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FORTIMAS: An Approach for Tracking the Population Coverage and Impact of a Flour Fortification Program

A new guide for guide for Fortification Monitoring and Surveillance is available!9 April 2014 // Smarter Futures, a partnership that brings together the Ministry of Foreign Affairs of the Netherlands, AkzoNobel, Flour Fortification Initiative (FFI), Helen Keller International (HKI) and the International Federation for Spina Bifida and Hydrocephalus (IF), has recently published a guide for Fortification Monitoring and Surveillance called FORTIMAS. It can be downloaded here. The primary aim of the guide is to propose a population-level data collection approach to help answer the question, “is the micronutrient status of those who regularly consume sufficient quality fortified flour improving?”.

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