Looking back, moving forward

December 23, 2015   World

International Federation for Spina Bifida and Hydrocephalus | Source

Poster 2015 in review-activitiesBrussels—The International Federation for Spina Bifida and Hydrocephalus (IF) Board and Secretariat members would like to wish you happy holidays and a prosperous 2016, which we hope will be a successful year for you both personally and professionally. Looking back at 2015, IF has witnessed a very successful and eventful year. We would like to take this opportunity and invite you to review past activities and our latest initiatives. We are looking forward to various conferences, meetings and trainings across the world, and of course, our upcoming International Conference on Spina Bifida and Hydrocephalus in Ghent.

 

 

  

  1. Folic acid mandatory fortification refers when a country has legislation that has the effect of mandating fortification of one or more types of wheat or maize flour or rice with at least iron or folic acid. Fortification is making tremendous progress in Africa. This year 2015, Burundi, Malawi and Nigeria have legislation to fortify with folic acid at least one grain.
  2. Smarter Futures, a public-private-civic partnership which, provides fortification technical support and training for flour millers, government food control staff, and other stakeholders in Africa, has organised two workshops:
  1. The first IF Youth group contributes to making young people with SBH experienced self-advocates of their issues and to develop IF’s work on topics that are relevant to youth with SBH. The Youth group met during the IF’s annual conference to establish their working procedures and agree on the work plan.
  2. International SolidarityIF’s Annual African workshop ”Lifelong care” was attended by representatives of IF member organisations from Norway and Sweden and people engaged in the field of SBH from 8 African countries. Since 2014, nearly 24.000 children are in the Spina bifida and Hydrocephalus Interdisciplinary Program, 146 support group meetings, 5.000 parents reached; 1.800 parents, children and youth trained in continence management; and 3.000 shunts have been sent.
  3. The 26th International Conference on Spina Bifida and Hydrocephalus: Equality, organised together with the Associazione Spina Bifida Italia (ASBI), took place in Solbiate Olona, from 16 to 18 October 2015. During the IF’s annual conference, Prof. Mastroiacovo, received the IF award  in recognition of his outstanding career and his significant contribution to the prevention of birth defects.
  4. Europe. This year the UNCRPD adopted the final recommendations to the EU. The Convention, indivisible part of the EU legal order since early 2011, obliges the Union to take all possible measures to ensure the right of people with disabilities to health, personal mobility and participation, among others.  Moreover, the European Commission published the European Accessibility Act, which sets common accessibility requirements for certain key products and services that will help people with disabilities at EU level to participate fully in society.
  5. Multifaceted IF’s activities: 
  • For the World Birth Defects Day, IF and 11 other international organisations working on birth defects created the first-ever World Birth Defects Day to raise awareness of this serious global health concern and advocate for more prevention, care and research to help babies and children.
  • In July, the first IF European workshop took place in Vilnius, Lithuania. IF members from 15 European countries came together to discuss their working priorities and to give the IF secretariat guidance for its 2016 activities.
  • Moreover, 19 IF members celebrated the third World Spina Bifida and Hydrocephalus Day on 25 October. 
  • Finally, members of the Spina Bifida and Hydrocephalus Scotland, Ailsa and Baxter Dick participated in the European Day of Persons with Disabilities. Also, Elisa Garcia, from the Madrid Association of Spina Bifida, and Ismail Tabak, from the Turkish Spina Bifida Association, attended the meeting.