The Societal value of Prevention, Diagnosis and Treatment of Rare Diseases

The prevalence of women taking folic acid supplements to reduce NTDs is still low; about 50% of all pregnancies are not planned08 October 2014 // During the ICORD 2014 Annual Meeting in the Netherlands, experts convened to discuss the lack of progress in the prevention of NTDs and how to translate research evidence into effective and efficient policy decisions, balancing benefits and risks globally, resulting in policy determinations acceptable to all stakeholders.

IF Secretary General, Lieven Bauwens emphasized the urgent need for primary prevention strategies from the point of view of the organisations for Spina Bifida and Hydrocephalus. More than 23 years have passed since the results of the Medical Research Council Vitamin Study were published which established beyond doubt that the intake of folic acid supplements reduces the risk of neural tube defects (NTDs) developing in pregnancy.

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South Africa: brand new association for people with SBH

The board of ASBAH SA with dr Carla Verpoorten and Lieven Bauwens2 October 2014 // The new Association for Spina Bifida and Hydrocephalus South Africa was launched during a ceremony in Cape Town last week.

Supported by a committed group of board members and experts, Zubeida Toefy (front middle) expressed a great ambition for the next couple of years. ASBAH SA intends to reach out to the different South African provinces and wants to develop, together with the South-African experts, a place where all persons with Spina Bifida and Hydrocephalus would be able to receive the right support.

The launch of ASBAH SA coincided with a workshop at the Red Cross War Memorial pediatric Hospital on multidisciplinary care for children with SBH in South Africa. This project started in March 2014 with the publication of 2 volumes of Continuing Medical Education in the South African Medical Journal:

Access to healthcare for all! 25 October #WSBHD


25 October #WSBHD
The World Spina Bifida and Hydrocephalus Day was held for the first time on 25 October 2012 at the European Parliament in Strasbourg. Supported by the WHO, IF members from all over the world made this event a great success. On 25 October 2013 we celebrated the launch of our PUSH platform and met at the European Parliament in Brussels to discuss the importance of access to healthcare. This debate continues in 2014 with our Global Campaign. Do you plan to organise some activities connected to the World Spina Bifida and Hydrocephalus Day on 25 October or around this date? This email address is being protected from spambots. You need JavaScript enabled to view it. and share your ideas and actions with the SBH community from all around the world! 

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European Year 2014

COFACE Reconciling Work and Family

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

With the support of Bayer Healthcare

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