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?”.

The importance of participatory citizenship in Europe

article 11 of the Treaty on the Functioning of the EU underlines the need for “institutions to maintain an open, transparent and regular dialogue with representative associations and civil society”3 April 2014 // Representatives of the European Year of Citizens Alliance (EYCA) of which IF is a member, met with the President of the European Parliament, Martin Schulz.

The aim of this meeting was to discuss citizenship participation as a vital aspect for Europe's future. For people with spina bifida and hydrocephalus discrepancies in the accessibility of healthcare services still remain main barriers in executing a fully active and participatory citizenship.

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