On 29 June 2011, the second report on the prevention of Neural Tube Defects (NTDs), entitled Act against Europe’s most common birth defects: one year on. Defining Neural Tube Defect prevention strategies in Europe and endorsed by EASPD, was launched at an event which took place in Brussels under the auspices of the Hungarian EU Presidency. The event was also championed by the Members of the European Parliament Edite Estrela (S&D, Portugal) and Ria Oomen-Ruijten (EPP, The Netherlands).
The report focuses on policies impacting NTD prevention from a horizontal perspective in 24 EU member states and Norway. In addition to EASPD, the second report is endorsed by the International Federation for Spina Bifida and Hydrocephalus (IF), Bayer HealthCare Pharmaceuticals, MediClara, and the European Foundation for the Care of Newborn Infants (EFCNI). The European Organisation for Rare Diseases (EURORDIS) also endorsed two specific factsheets of the report and the European Surveillance of Congenital Anomalies (EUROCAT) provided updated data on NTD prevalence and terminations.
It is estimated that up to 70% of NTDs can be avoided through adequate folate levels in women of childbearing age before conception. Despite existing recommendations to improve women’s folate levels, data shows that, in Europe, there are more than 4,500 NTD affected pregnancies every year, of which an estimated 72% are terminated following a prenatal diagnosis. These figures can be partly explained by the fact that health campaigns often dismiss that in Europe up to 50% of pregnancies are unplanned and that women are therefore not pro-actively seeking prenatal advice. This also means that women are left unaware of the importance of raising their folate levels before conception through an adequate implementation of the WHO recommendations of daily folate intake, i.e. 0.4mg of folic acid at least two months prior to conception and 12 weeks into their pregnancy.
Ms Paula Duarte Gaspar, Member of Cabinet of John Dallì, Commissioner for Health and Consumer Policy and MEP Edite Estrela gave the opening and the closing keynote speeches at the event. Participants also included representatives from the Council, Spina Bifida organisations from across Europe and organisations working in the field of health. All agreed that much more can be done in the area of NTD prevention and that women need to receive the right advice about NTD prevention at the right time, i.e. prior to conception.
You can download the report on the European Commission website at: http://ec.europa.eu/health/rare_diseases/docs/ntd_report_2011_en.pdf
For more information about the launch event, presentations, pictures and meeting report please visit: http://oursocialmedia.com/brussels/neural-tube-defects-report-2011/
If you want to contribute to raising awareness on Neural Tube Defects (NTDs) and its preventive measures help us today by...
... uploading the 2011 report on NTDs on your organisation’s website
... sharing the 2011 report on NTDs in your Facebook status update from our EASPD’s Facebook page
... disseminating the 2011 report on NTDs across your network and including a feature in your organisation’s newsletter
... sending the 2011 report on NTDs to your mailing list including to your national policy-makers