Raising awareness

Raising awareness is at the heart of our mission. We believe that knowledge leads to understanding, and understanding fosters inclusion, respect, and stronger rights for persons with Spina Bifida and Hydrocephalus (SBH).

Why do we raise awareness?

Persons with SBH and their families often face barriers in health, education, employment, and daily life. Many of these barriers stem from limited knowledge and awareness in society and among decision-makers. By shining a spotlight on their realities, we seek to challenge misconceptions, highlight rights, and ensure that the voices of persons with SBH are heard in all areas of policy and practice.

For whom we raise awareness?

Our awareness efforts are directed towards:

• Policymakers, so that legislation and policies reflect the needs and rights of persons with SBH;
• Our members and member associations, empowering them with knowledge and tools to strengthen their advocacy at local, national, and regional levels;
• Allied organisations, healthcare professionals, and academics, to build stronger collaborations and exchange knowledge;
• The general public, to encourage understanding, inclusion, and solidarity.

How do we raise awareness?

We conduct awareness-raising activities through:

• International Awareness Days
  Each year, IF highlights key occasions such as World Folic Acid Awareness Week, World Birth Defects Day, International Youth Day, International Day of Older Persons, and World Spina Bifida and Hydrocephalus Day. These events provide platforms to share information, celebrate achievements, and mobilise support for disability rights.
• Topic-Specific Campaigns
  Beyond formal awareness days, IF undertakes campaigns on health, education, and policy topics relevant to persons with SBH. These activities target specific issues, reach diverse communities worldwide, and aim to generate practical action and policy change. 

Our campaigns include multilingual toolkits, articles, visual content, and social media outreach, often translated and adapted by our members for local impact. We monitor and evaluate our efforts using engagement metrics, ensuring that each campaign strengthens the visibility of the SBH community and contributes to global human rights and disability inclusion initiatives.

Through these combined efforts, IF works to empower advocacy efforts of individuals with SBH, support their families, influence policy, and foster a more inclusive world.