First Workshop on Spina Bifida and Hydrocephalus in Ugandan Parliament

IF Child Help, IF and partners (AVSI, CURE, Katalemwa and Ours) were invited by the Ugandan Parliamentary Forum for Children (UPFC) to raise awareness on Spina Bifida and Hydrocephalus and its consequences for Ugandan society. This workshop was the first of its kind and was attended by over 50 members of parliament and the Minister for the Elderly and the Disabled, Hon. Madada. IF Secretary General Lieven Bauwens discussed the importance of good care, prevention and international policy. Mr. Derek Johnson presented the Cure Children's Hospital of Uganda as a prime example and Dr. William Ssali gave an update on the status of fortification in Uganda. The UPFC will forward some of the conclusions of the workshop in the strategy plan for the next Ugandan Parliament.
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Ugandan Minister for the Elderly and the Disabled, Hon. Madada

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Successful ARSBH annual conference in Bucharest, Romania

The Romanian Association for Spina Bifida and Hydrocephalus (ARSBH) held its annual conference on 15-16 October, 2010 in Bucharest. Professional experts from various EU countries lectured on the treatment and follow-up care of Spina Bifida and Hydrocephalus. The aim of the conference was to minimise the effects of these conditions and to improve the quality of live of people with Spina Bifida and Hydrocephalus. The conference also focussed on the importance of inclusion of people with disabilities in the Romanian society. Jan Jarab, Regional Representative of the UN High Commissioner for Human Rights gave an opening speech. Other speakers were IF board member Luís Quaresma from Portugal (ASBIHP) and representatives from IF's member association in Ireland (SBHI), including their CEO George Kennedy and chairman Fiach McDonagh. A selection of photographs from the ARSBH annual meeting can be seen here.

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ASBAH's medical advisor Carole Sobkowiak presented a lecture on Hydrocephalus: Physical and Language Development

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Stigma results in discrimination

No treatment of severe birth defects such as Spina Bifida and Hydrocephalus results in a bad outcome for children with these conditions. A bad outcome results in a negative view on the predicted quality of life for these infants, especially in an environment where disability is seen as a curse or a burden on the family and/or society. Consequently there will be no referral for surgery. Every year hundreds of children in Europe are thus discriminated against and their basic human rights are violated, because their parents received biased information, based on a negative perception of disability. This denial of rights often results in institutionalisation, lack of education, and inhumane living conditions. That was the message of IF president Pierre Mertens and IF Secretary General Lieven Bauwens to the High Level Group on Disability of the European Commission. IF proposed to cooperate with those governments in Europe that request support in the development of programmes that will improve the quality of life of persons with Spina Bifida and Hydrocephalus.

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Articles 10 and 25 of the UN Convention on the Rights of Persons with Disabilities safeguard the rights to life and the enjoyment of the highest attainable standard of health

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