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IF's EU Contest - It's about you!
IF and Bayer Schering Pharma are planning to launch a second report about the prevention of Neural Tube Defects in 2011. In this second report we would like to include testimonials from people of all ages with Spina Bifida and/or from their parents, partners or friends. Many people are familiar with the medical description of Spina Bifida, and words like neural tube defect, congenital malformation, or birth defect. Yet there's more to your life than "having" Spina Bifida, or for family members or partners and friends to be "care takers". We would like you to show the world what it actually means to live with Spina Bifida. Tell us what it is that defines you or your relationship. After all, it's about you! IF welcomes entries from outside the EU too. Read more here.
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People with Spina Bifida and/or Hydrocephalus can live a full life with equal value to that of any other citizen
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WHO Global Burden of Disease (GBD) Health Measurement Survey
In 1990 the first GBD study quantified the health effects of more than 100 diseases and injuries for eight regions of the world. This study was updated for the year 2000-2002 and included a more extensive analysis of the mortality and burden of disease attributable to 26 global risk factors. A 2004 update provided detailed global and regional estimates of premature mortality, disability and loss of health for 135 causes by age and sex, drawing on extensive WHO databases and on information provided by Member States. The World Health Organization is currently collaborating with the Institute for Health Metrics and Evaluation and other academic partners in a new round of the GBD 2010 study. A description of diseases and injuries and the risk factors that cause them is vital for health decisionmaking and planning. You can share your opinion and participate in the study by completing a Health Measurement Survey. |
By participating in the survey, you will ultimately enable policymakers and health care leaders to make better decisions based on stronger evidence
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Carer payments for parents of adult children with severe disabilities
In New Zealand the Chief Human Rights Commissioner Rosslyn Noonan has called on the Government to begin carer payments immediately to a group of parents looking after adult children with severe disabilities. The Human Rights Review Tribunal has found the policy not to pay family members for the services they provide to their children discriminating. The Tribunal did not accept that the support given by family members to “heavily dependent persons”, particularly when they reach adolescence and adulthood, can be considered as “natural” support. The Tribunal also found that the policy acted against the objectives of the NZ Disability Strategy. The NZ government has appealed the decision. Meanwhile the National Health Committee has published the report "How should we care for the carers, now and into the future?". |
Nine parents went to court to demand payment from the Ministry of Health for the care they provide for their children in the family home
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Conferência Europeia sobre Cuidados Pré-Concepcionais
Em 2010 a Bélgica será um dos três estados-membros a quem cabe assegurar a Presidência do Conselho da UE por um período de 18 meses. Nesta ocasião, a PROCOP planeia a realização de uma Conferência Europeia sobre Cuidados Pré-concepcionais e Saúde Pré-concepcional, a realizar em Bruxelas, entre os dias 6 e 9 de Outubro. Está disponível um programa provisório na página de Internet da conferência (em língua francesa). A FI coopera com a PROCOP neste importante projecto. Correlaciona-se com os planos da FI no sentido de estreitar a colaboração com ginecologistas e obstetras para garantir excelentes condições de pré-concepção e aconselhamento pré-natal. A FI é um acérrimo defensor da prevenção primária através da ingestão pré-concepcional de ácido fólico. |
A conferência centra-se na importância dos cuidados pré-concepcionais e prevenção das deformações congénitas |
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Public Health Portal of the European Union
The Health and Consumers Directorate-General maintains the Health-EU Portal, the official public health portal of the European Union. The main objective of this thematic Portal is to provide European citizens with easy access to comprehensive information on Public Health initiatives and programmes at EU level. The portal is an important instrument to positively influence behaviour and promote the steady improvement of public health in the 27 EU Member States. To meet this aim the European Commission has set up an Editorial Board to agree an editorial policy based on the best expert advice of members and in line with the quality criteria set out under EUROPA guidelines. The Health-EU Portal is directed at those who want to keep informed about issues affecting their health, and at those who wish to keep up to date with policies and decisions taken at European, national and international level. |
The portal is accessible to everyone, including older people and people with disabilities, as it follows the internationally recognised rules on accessibility
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Significant reduction neural tube defects in north Jordan
Scientists in Jordan have studied the effect of Folic Acid fortification on the incidence of neural tube defects in Jordan. Professor Zouhair O. Amarin and Ahmed Z. Obeidat held their research at the Princess Badea Hospital in the north of Jordan, before and after the national food fortification with Folic Acid was implemented. Between 1 January 2000 and 31 December 2006 they retrospectively extracted the total number of births at the hospital, as well as the number of pregnancies affected by Spina Bifida and Anencephaly per 1000 births during this period. A total of 78 infants with neural tube defects were recorded among 61 447 births during the study period. The difference between incidence of neural tube defects in the periods before and after food fortification with folic acid was statistically significant. Their research showed a 49% decline in the rate of neural tube defects. Source: Paediatric and Perinatal Epidemiology, volume 24 Issue 4, pages 349-351, July 2010. |
The incidence of neural tube defects in north Jordan decreased from 1.85 per 1000 births from before to 0.95 after full Folic Acid fortification, a 49% reduction
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