Reflecting on World Spina Bifida and Hydrocephalus Awareness Month 2025

13 November 2025

Accelerating Action for Spina Bifida and Hydrocephalus

Every October, the global Spina Bifida and Hydrocephalus (SBH) community comes together to raise awareness, share experiences, and strengthen our collective voice. This year’s theme ‘Accelerate Action for Spina Bifida and Hydrocephalus’ (#Action4SBH) inspired a powerful global movement of advocacy, creativity, and solidarity.

Established by IF in 2011, World Spina Bifida and Hydrocephalus Day on 25 October has become a key moment to promote the rights and inclusion of persons with SBH worldwide. In 2025, activities took place throughout the month, bringing together individuals, families, associations, and allies from all regions.

A Month of Global Engagement

Throughout October, IF Members and partners organised an impressive variety of initiatives highlighting the diverse experiences and aspirations of the SBH community.

From Poland to Malaysia, Nigeria to Chile, and beyond, members hosted local events, including awareness walks, workshops, creative activities, educational webinars, and youth empowerment sessions. These actions were united by a shared commitment to remove barriers, challenge stigma, and ensure that persons with SBH can fully participate in society.

At the global level, IF hosted several online events and trainings. Early in the month, a webinar on Living with Spina Bifida and Hydrocephalus: Our Lives, Our Choices opened space for lived experiences and intergenerational dialogue. Later sessions explored Inclusive Employment and Skills for Life, and regional side events in Asia-Pacific and Africa highlighted prevention and community perspectives.

On 25 October, the central WSBHD Global Webinar brought together advocates, professionals, and policymakers to reflect on progress and discuss practical steps to accelerate action from improving healthcare and accessibility to strengthening rights-based policies.

To close the month, IF organised a special members advocacy training titled Empowering Advocacy: Voices of Persons with Spina Bifida and Hydrocephalus, building capacity among members to advocate effectively at national and international levels.

Launch of the 2025 Policy Brief

A milestone of this year’s observance was the publication of IF’s Policy Brief: “Towards a United Nations-recognised International Day for Spina Bifida and Hydrocephalus” (available here).

This document sets out the global case for official UN recognition of World Spina Bifida and Hydrocephalus Day, outlining how such recognition would strengthen advocacy, visibility, and policy action worldwide.

The brief calls on governments, UN agencies, and civil society to take coordinated action by:

Promoting mandatory folic acid fortification and maternal health education;
Integrating SBH prevention, care, and inclusion into national health, education, and social policies;
Strengthening data collection and multidisciplinary care;
Ensuring meaningful participation of persons with SBH and their families in policy dialogues; and
Institutionalising a UN-recognised WSBHD to sustain global visibility and accountability.

By linking SBH to the Sustainable Development Goals, the WHO Disability and Health Equity Agenda, and the UN Convention on the Rights of Persons with Disabilities, the brief demonstrates how addressing SBH contributes directly to global commitments on health, equality, and human rights.

Creativity and Community through the WSBHD25 Challenge

This year’s #Action4SBH Challenge encouraged individuals and families to share their voices creatively, through short texts, photos, drawings, and videos. Submissions from around the world reflected courage, hope, and determination. On 25 October, IF showcased all contributions on social media, where they reached wide audiences and inspired countless others to take action.

We are delighted to announce that the contribution by Fekadu Yadessa from Ethiopia is the winner of this year’s WSBHD25 Challenge! Through his powerful message, Fekadu called for #Action4SBH on prevention through food fortification with folic acid in Ethiopia.

His inspiring submission will be featured across IF’s website and newsletter, a celebration of creativity and empowerment through storytelling.

Raising Voices Online

To help participants share their messages, IF launched the WSBHD25 Toolkit, available in English, Spanish, and Chinese thanks to the generous contributions of IF members and partners. The toolkit included banners, posters, quote templates, story frames, and videos, empowering individuals and organisations to join the online campaign and raise awareness across languages and regions.

Hundreds of posts using the hashtags #WSBHD25 and #Action4SBH reached audiences worldwide, turning social media into a global stage for inclusion and awareness.

Looking Ahead: Towards UN Recognition

This year’s theme Accelerate Action captured both urgency and hope. It called for tangible progress: From policy reform and prevention to inclusion and rights.

The 2025 Policy Brief reminds us that global recognition through a United Nations–designated International Day would not be symbolic alone, it would be a catalyst for sustained advocacy, resource mobilisation, and solidarity across nations.

To advance this goal, IF is actively engaging with national governments and UN contact points, identifying official entry points within Member States to submit the proposal and build support. By fostering these connections, IF aims to create a broad coalition of governments and stakeholders who will champion the establishment of a UN-recognised WSBHD.

If your organisation sees possibilities or has contacts within your country’s government or UN missions, we would greatly appreciate your support in advancing this initiative.

By securing this recognition, the global community can ensure that Spina Bifida and Hydrocephalus are no longer overlooked, but acknowledged as vital public health and human rights priorities.

Gratitude and Community Spirit

IF extends sincere thanks to all member organisations, contributors, and partners who made this year’s Awareness Month a success. YOUR commitment embodies the spirit of unity and action.

As we move forward, let us continue to accelerate awareness, strengthen inclusion, and advocate for a world where every person with Spina Bifida and Hydrocephalus lives with dignity, support, and opportunity.

Explore all the creative WSBHD25 Challenge contributions and highlights from this year’s celebrations on our official website:
www.worldspinabifidahydrocephalusday.com/challenge-contributions-2025

All Webinars and Livestreams are available here: