Georgian government guarantees life-saving medical care for children with Hydrocephalus

"We should never see images of small children with enormous heads who have become blind and intellectually impaired... because they do not receive adequate treatment.” Jan Jařab, Regional Representative of the UN High Commissioner for Human Rights (2011)5 May 2014 // Last week, the Republic of Georgia adopted guidelines which guarantee life-saving surgeries for children with Hydrocephalus. These guidelines are a direct result of the recommendations published in a Disability Rights International (DRI) report called "Left Behind: the Exclusion of Children and Adults from Reform and Rights Protection in the Republic of Georgia" released in 2013, and a 2012 report from the Georgian Ombudsman. Both reports highlighted the inhumane circumstances of children with Hydrocephalus that were left untreated in the Tbilisi Infant's House, which could be considered the equivalent to torture.

Immediate medical treatment of hydrocephalus, as proposed in the new guidelines, will prevent Georgian children from this ordeal and lower the risk of severe intellectual disability and death. The new medical procedures involve a huge step forward in the protection of human rights of children with hydrocephalus. IF welcomes this great improvement in the lives of children with hydrocephalus and hopes the Georgian government will also follow the DRI key recommendation with regard to children born with Spina Bifida and develop similar guidelines for their treatment and care.

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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Supported by the European Commission - Directorate-General Justice. Integration of People with a Disability - via the PROGRESS programme

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