"In my SHoes" Support Dominik in his journey to reach the EU leaders!!

Are you a young person with spina bifida and/or hydrocephalus yourself? Do you have any suggestions on what should be highlighted by Dominik in his public performances?On 20 November 2014, the Universal Children’s Day and the 25th anniversary of the UN Convention on the Rights of the Child (CRC), a young boy with Spina Bifida and Hydrocephalus from Slovakia is addressing the three top EU institutions' representatives: European Council, European Parliament, and European Commission. 

This happens in the framework of the Fourth Annual Convention of the European Platform against Poverty and Social Exclusion, a flagship initiative of the Europe 2020 strategy.  There is much to celebrate as we mark the 25th anniversary of the CRC, from declining infant mortality to rising school enrolment, but this historic milestone must also serve as an urgent reminder that much remains to be done. Too many children still do not enjoy their full rights on par with their peers.

Read more...

People with Spina Bifida and Hydrocephalus call for the realization of the right to health

For people with Spina Bifida and Hydrocephalus limited or inadequate access to healthcare can increase their marginalization in society and their risk of developing life threatening complications.25 October 2014 // The World Spina Bifida and Hydrocephalus Day’s third edition kicks- off with the theme “Access to Healthcare for all". It reminds the public and policy makers that Spina Bifida and Hydrocephalus are a reality and increases awareness to improve the lives of people living with these conditions while celebrating many achievements made by our enthusiastic worldwide community.

Persons with Spina Bifida and/or Hydrocephalus and their parents need healthcare and social services to coordinate and cooperate with each other, in order to deliver appropriate, timely, adequate and efficient treatment and support. Services provided at an affordable and accessible multidisciplinary clinic are the best way to treat, support, and follow up a person with Spina Bifida and/or Hydrocephalus.

Read more...

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.

Read more...

Subscribe to our mailing list

Email Format

Font Resizer

Decrease font size Default font size Increase font size

European Year 2014

COFACE Reconciling Work and Family

Eu Flag

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

With the support of Bayer Healthcare

Arabic ass boobs amd