IF colours the debate on preconception care

IF invested its expertise and participated in the first European Conference on Preconception Care and Preconception Health in Brussels organised by Dr. Pierre Delvoye and the French Belgian community (ONE). Many participants were touched and impressed by IF president Pierre Mertens' speech "Why should we prevent who we love?". He reminded the participants that prevention should never involve a value judgement on those living with Spina Bifida. They are much more than their medical diagnosis. During the conference IF also underlined the importance of the involvement of organisations of people with disabilities and presented its draft position paper on prenatal counselling. IF Board Member Margo Whiteford led a remarkable workshop on genetic counselling and US public interest lawyer and IF volunteer James E. Wilkinson presented an important workshop on ethics, disability stereotypes and international human rights.
IF board member Margo Whiteford, president of the Scottish Spina Bifida Association, consultant geneticist and senior lecturer in Medical Genetics at the University of Glasgow


Spina Bifida Association Launches SB University

This month the Spina Bifida Association (SBA) launches a new online educational platform called SB University (SBU). SBU offers both live and archived seminars on topics related to Spina Bifida. These can vary from health related seminars with medical professionals to employment or education tips from subject matter experts. The goal is to increase education about topics that are important to our Community. Initially, the site features taped sessions from the 2010 SBA National Conference. As time goes on, live sessions will begin. All live sessions will be recorded and archived on the site. SBU sessions are offered at no cost. All the user needs is a computer with Internet access. Users will need to register to receive a user name and password to access the site. More information can be found on SBA's home page, www.spinabifidaassociation.org, and the SBU home page, www.sbuniversity.org.
SBA's Spina Bifida University offers seminars and lectures on a broad range of topics 24 hours a day, 7 days a week


Spina Bifida Awareness Month in the US

In the United States of America, October is Spina Bifida Awareness Month. US Congressman Chris Smith has introduced a resolution, H. Res. 1664, to raise awareness of the ongoing, life-long medical and psychosocial needs of individuals living with Spina Bifida. The resolution also recognizes the importance of increasing access to health care for individuals with disabilities, including those with Spina Bifida, and the need for health care facilities and examination rooms to be accessible for individuals with disabilities. The Secretary of Health and Human Services is urged to establish a National Advisory Committee on Access to Health Care for Individuals with Disabilities. The resolution also focusses on the need to highlight efforts to prevent Spina Bifida through daily Folic Acid intake by women of childbearing age, prior to becoming pregnant.
US Congressman Chris Smith is a longtime healthcare advocate who co-chairs the Spina Bifida Caucus in Congress


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