Human Rights

Promoting and protecting human rights is at the core of our mission. We believe that every person with Spina Bifida and Hydrocephalus (SBH) has the right to live with dignity, access essential services, and participate fully in society. Our work is guided by the principle “Nothing about us, without us”.

Why do we focus on human rights?

Persons with SBH often face barriers in healthcare, education, employment, and social inclusion. These barriers are frequently linked to gaps in policy, discrimination, or lack of awareness of disability rights. By advocating for human rights, IF ensures that the needs and perspectives of persons with SBH are recognized and respected at local, national, and international levels.

For whom do we work?

Our human rights efforts target:

• Policymakers, to ensure legislation and policies align with the rights of persons with SBH;
• IF members and member associations, equipping them with tools to advocate effectively;
• Allied organisations, healthcare professionals, and academics, to strengthen collaboration and promote evidence-based advocacy;
• The general public, to foster understanding, inclusion, and support for equal rights.

How do we advance human rights?

IF works globally to ensure the implementation of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), the European Strategy for the Rights of Persons with Disabilities (ESRPD), and other human rights frameworks. Our activities include: 

• Advocacy campaigns targeting specific policy issues and systemic barriers;
• Participation in international, regional, and national policy processes;
• Education and training for members and partners on rights-based approaches;
• Communication initiatives to raise awareness of human rights standards and their relevance to the SBH community.

Through these efforts, IF supports its members to claim their rights, strengthens policy frameworks that support inclusion, and promotes a society where disability rights are respected everywhere.