What’s our next Turning Point? The Global Prevention Initiative!

2 November 2016

2 November 2016 // More research in prevention and improvements in care needed to achieve the next turning point by the global community of Spina Bifida and Hydrocephalus.

During the past three days Ghent hosted almost 300 participants of the Turning Points Conference. It was already the 27th International Conference on Spina Bifida and Hydrocephalus. The debates were very innovative, frank and sometimes emotional. One of the highlights of this weekend was the official launch by HRH Princess Astrid of Belgium of the first Global Prevention Initiative.

Several important meetings took place: IF Youth Group, IF Global Experts Panel, Working Group International Solidarity, IF EU workshop, and the workshop for SBH clinicians on multidisciplinary care, foetal surgery and European Reference networks.


Each year the IF Award is presented to an individual or organisation in recognition of their special contribution to the service of people with disabilities in general or to people with Spina Bifida and Hydrocephalus in particular. This year, HRH Princess Astrid of Belgium together with IF’s President Margo Whiteford awarded Catalina Devandas and Myleen Christiaens with the annual IF’s Award.

Myleen Christiaens is a coordinator nurse for children and adults with Spina Bifida at the University Hospital Leuven in Belgium, where she is involved in urodynamic evaluations for paediatric disciplines. For many years she has been volunteering for IF and Child-Help as continence nurse for healthcare education in Africa, as well as contributing to IF conferences and workshops with her expert knowledge.

Catalina Devandas Aguilar is a lawyer by training and human rights advocate born with SB, who has worked extensively on disability issues at the national, regional and international level. She is the UN Special Rapporteur on the rights of persons with disabilities.


The IF Board has adopted the Statement on Multidisciplinary Care to be used by its members as an advocacy tool.

Margo Whiteford has been re-elected as IF President and four new Board members have been elected to join the IF Board for the mandate of 3 years: Tom Scott (Ireland), Aziza Mustafa Elnaeema (Sudan), Papatya Alkan Genca (Turkey), and Nicola Busata (Italy). Congratulations for the newly elected members and thank you to the leaving members: Thelma Cloake, Nurdan Emine Anli, Santosh Karmarkar, and Lumbwe Chiwele.

IF General Assembly decided to enlarge IF’s membership, accepting five new SBH communities from:
– Algeria: Association des Parents et Malades Spina Bifida Bejaia
– Belgium: Association Spina Bifida Belge Francophone (ASBBF)
– Japan: Japan Council for Spina Bifida and Hydrocephalus
– Malaysia: Spina Bifida Association Malaysia (SIBIAM)
– Morocco: Association de Spina – Bifida et Handicaps Associés (SBIHAM)