23 June 2022


International organisations such as the European Union (EU), the United Nations (UN) and World Health Organization (WHO) and others have a significant role in shaping national and regional policies. Advocacy towards international organisations plays a key role in IF’s policy and advocacy work. However, although international federations such as IF are essential to raise the profile and impact of spina bifida and hydrocephalus (SBH) advocacy on the international level, national and grassroots advocacy is a vital component of achieving global change. International institutions are composed of national policy makers and international actions do not only influence national policies, but national advocacy in turn also influences international actions. 

It is imperative to have the push for change come from the national level and the voices of the SBH community be loud and visible in these actions, thereby advancing the rights and needs of persons with SBH.

However, IF acknowledges that its members as the associations representing people with SBH in different nations may have limited experiences and knowledge to initiate an advocacy campaign and outreach to policy makers at the European and international level. This was also reflected from the members’ feedback from IF’s activities in 2021 which identified the need for advocacy for primary prevention of spina bifida as a high priority concern for the SBH community.

Taking this into consideration IF understood its role to strengthen the capacity of IF members through thematic training on policy and advocacy as the umbrella of European and non-European SBH associations. On May 6 2022, IF provided thematic training for IF members focusing on policy and advocacy from the national level to have an impact on the international level with mandatory fortification of folic acid of staple foods for the primary prevention of spina bifida as an example.


The objectives of IF Members Training were to provide an open space for questions and answers from IF members, and provide IF members with concrete tools to join the advocacy towards international organisations from the national level by clearly understanding: 

  • what international organisations are and how they work
  • why international organisations play an important role for the advancement of the rights and needs of the SBH community
  • how international actions have an impact on the national and local level
  • how national level advocacy impacts actions on the international level



Hildur Önnudóttir, Policy Officer at the International Federation for Spina Bifida and Hydrocephalus, provided information about key concepts of international organisations and highlighted how the activities of international organisations relate to SBH advocacy and why it is important to advocate on an international level.
Dolores Cvitičanin, Public Affairs Manager at Rare Disease International (RDI), demonstrated an example of how RDI advocated for the UN General Assembly (UNGA) Resolution on Persons living with a rare disease and their families.


The IF members training “From local to global – how to influence international actions through national advocacy” taking place on May 6 2022 provided an overview of key concepts and processes of international organisations. The role of civil society in shaping the activities of international organisations and how campaigns for actions are designed and implemented. Most importantly, the training demonstrated how national SBH associations can make a change at the international level with concrete examples of best practice. Mandatory fortification of staple foods with folic acid was the focus theme used to demonstrate the practical applications of this type of advocacy as well as to provide inspiration for IF members to participate in the campaign for a WHO resolution on mandatory fortification of staple foods with folic acid. At the end of the training, all participants gathered for discussions on how to identify key issues in specific countries and explore practical strategies to advocate effectively in their regions. 

After this training, IF keeps facilitating further meetings with members to provide support and empower IF members to be active in national, European and international advocacy activities. One of which is the follow-up webinar focusing on exchanging examples of best practices around local advocacy from IF members has been scheduled for July 15 2022. This webinar is planned in response to the feedback received from this members training with the objective of further supporting and empowering IF members in engaging in advocacy work. This is an unique opportunity for IF members to learn from each other, present on their work and successes for the inspiration and instructions of other IF members. The registrations of the webinar are now open, please register here.

At this moment, IF with different partners and IF members are working together on raising awareness of the primary prevention of neural tube defects through folic acid fortification with WHO (World Health Organization). To read more about this campaign, please visit here.