27 May 2014 // On 11 April 2014, the first Spina Bifida and Hydrocephalus Prevention and Care Partner Engagement meeting was held. It was organized by Boston Children’s Hospital, the International Federation for Spina Bifida and Hydrocephalus (IF), and CDC’s National Center on Birth Defects and Developmental Disabilities. It brought together representatives from 21 different organizations in academia, health services, private and public sectors, who came together to discuss ways to address challenges, help advance research, and strengthen and move forward prevention and care efforts in the fields of Spina Bifida and Hydrocephalus.
23 May 2014 // The 67th World Health Assembly approved the World Health Organization (WHO) global disability action plan 2014–2021: Better health for all people with disability. This action plan outlines why specific action is required to ensure better health for persons with disabilities and gives clear objectives to achieve this through access to mainstream healthcare, rehabilitation, assistive technology, technical support and improved data. IF took part in the WHO consultation that was launched last year and highlighted areas of importance to people with Spina Bifida and Hydrocephalus.
22 May 2014 // In 2013 IF President Margo Whiteford and former IF President Pierre Mertens established strong connections with the China Disabled Persons' Federation (CDPF) in an effort to raise awareness about Spina Bifida and Hydrocephalus (SB/H), remove stigma, and improve the access to healthcare for people with SB/H in China. As a result, a special committee for Spina Bifida and Hydrocephalus has been established within the CDPF this year. IF's President and Secretary General were both present at the launch ceremony to celebrate the start of the official Chinese SB/H association. As part of the events a Chinese website dedicated entirely to SB/H was created: www.jzlz.org.