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.

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


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.

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


Katalemwa Cheshire Home launches Folic Acid awareness campaign

On October 14, IF partner Katalemwa Cheshire Home will start an awareness campaign on the use of Folic Acid in Uganda. The campaign will run for 3 months and will be launched by the Archbishop of Uganda, Rev. Cyprian Kizito Lwanga. Several government dignitaries, including ministers and members of parliament, will be present at the launch as well. Many disability organisations, religious organisations and schools have already confirmed their participation. The organisers expect over 700 people to attend the event. The campaign is aimed at sensitizing the public about the importance of the timely use of Folic Acid in women of childbearing age. The theme for the day is "Folic Acid, all women every day". The campaign will also emphasize the need for increased support for children with Spina Bifida and Hydrocephalus. 
At the rehabilitation  centre Katalemwa Cheshire Home in Kampala, Uganda, children treated for Spina Bifida and Hydrocephalus receive follow-up care


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