30th International Conference on Spina Bifida and Hydrocephalus, Kuala Lumpur Malaysia

From October 24th to 26th, the 30th International Conference on Spina Bifida and Hydrocephalus “Bridging the healthcare and prevention gaps – A multidisciplinary team approach with the community at heart” was convened in Kuala Lumpur (Petaling Jaya, Selangor), organised by the Spina Bifida & Hydrocephalus Association of Malaysia (SIBIAM) in collaboration with the International Federation for Spina Bifida and Hydrocephalus (IF). 

Conference Programme Book 

Together with the international scientific conference committee, a conference programme book was developed to provide important information on the conference agenda, presentation abstracts, introduction to the conference keynote speakers and faculty, opportunities for engagement through workshops, visibility for sponsors, and the conference logistical information. 

Conference Participants

For the first time, this 30th international conference builds a new bridge between health professionals, researchers, individuals living with spina bifida and/or hydrocephalus (SBH), their families, and emerging scholars to discuss strategies for addressing gaps in healthcare and prevention, while promoting a multidisciplinary approach that places community at its core. Contributions were received from across the globe, representing a wide array of perspectives and shared experiences.

Conference Highlights

With this biennial topic specific conference IF aimed to bridge the healthcare and prevention gaps, while taking a multidisciplinary approach with the  community at heart. A first highlight was the unique interaction between different stakeholders. The conference build a new bridge between health professionals, researchers, individuals living with spina bifida and/or hydrocephalus (SBH), their families, and emerging scholars to discuss strategies for addressing gaps in healthcare and prevention, while promoting a multidisciplinary approach that places community at its core. Secondly, the different types of sessions (e.g., keynote lectures, parallel sessions, roundtable discussions, poster viewings, forums, workshops) allowed for good engagement between the participants. In addition, the wide range of topics (managing neurogenic bladder and bowel, maximising mobility and functional activities, addressing psychological issues, sexual health and reproduction, home exercise, nutrition and wellness, and advocacy and policy matters) ensured good discussions in setting joint priorities. Thirdly, special attention was given to the civil society spina bifida and hydrocephalus associations through so-called country update presentations. Fourthly, the programme gave attention to intersectionality which allowed discussions relevant for youth, the ageing population, women with disabilities, intergenerational learnings, and ways to strengthen advocacy in accordance with the UNCRPD. Fiftly, a strong focus was given to addressing cross-cutting themes with respect to multidisciplinary care and independent living. For instance; the sessions on urological management also included discussions on mental health; and, during the workshop on large scale food fortification the perspectives from genetics brought prevention to a whole other level. Sixtly, the conference proceedings resulted in a so-called Kuala Lumpur Declaration, highlighting areas of commitments by conference participants. Sevently, as part of the WSBHD celebrations, engagement was sought with the global SBH community through hybrid means. This has resulted in colourful contributions through pictures, video’s and text, as well as a conference webinar livestream. Eightly, partnerships were made and strengthened. A particular highlight was the workshop on large scale food fortification whereby partners from public (eg., WHO, WFP, Ministry of Health Malaysia, scientists from academic institutes), private (eg., premix suppliers), and civic sector (SBH representatives, healthcare professionals) discussed the importance of measures to prevent micronutrient deficiencies in support of the future work in Malaysia and the region. Ninely, to honour our community champions, awards were provided in three categories including: the global healthcare professional hero award, the global lifetime achievement award, and the award of excellence. Tently, there were many occasions where the work in the European Region served as an inspiring example towards the world. For instance through the presentation on a collaborative endeavour towards urological management. This reflected the partnership IF has with the ERN eUROGEN, ERN ITHACA, and the EAU on the updated paediatric urological guidelines for spina bifida. 

Conference in Numbers

This anniversary conference brought together 350 participants from 30 countries around the world. The Conference took place over 3 days in Kuala Lumpur Malaysia. We had the pleasure of welcoming 2 Keynote Speakers, 107 Faculty, 88 sessions, 14 workshops, 4 forums and roundtables, and >12 posters and >71 oral presentations. During the closing Stars & Strides evening, we furthermore welcomed the 36 partners and sponsors.

Kuala Lumpur Declaration

During the 30th International Conference on Spina Bifida and Hydrocephalus, it was highlighted that health constitutes an important form of social inclusion, understood as both physical and mental wellbeing, enabling full participation in social and economic life. Equitable access to quality healthcare, preventive services, rehabilitation and psychological support is essential to ensuring that every individual, regardless of health conditions or disabilities, can lead an active, inclusive and dignified life. Key elements of health as a means of social inclusion include equitable access to healthcare, prevention and rehabilitation services, the protection of mental health and a multidisciplinary approach to care. 

Therefore, commitments on both prevention and multidisciplinary care are essential to achieving the highest attainable standards of health without discrimination on the basis of disability, as stipulated by Article 25 of the UNCRPD and to effectively achieve the SDGs, notably SDG 2 (ending malnutrition) and SDG 3 (ensuring health and well-being for all). 

With the so-called Kuala Lumpur Declaration, an advocacy tool was developed arising from the conference proceedings which reflect commitments of signatories to collaborate on the current situation regarding gaps in healthcare and prevention, as well as the promotion of a multidisciplinary approach. These commitments include:

• To support and facilitate discussions with relevant ministries and agencies on mandatory fortification programs of vitamin B9 staple food, important for safe and effective primary prevention;
• To strengthen through awareness creation, the importance of integrated multidisciplinary care crucial for the lifelong support of persons affected by SBH and their families;
• To encourage knowledge sharing and understanding on the role of genetics amongst HCP, persons with SBH and families in order to better facilitate the process of communication of diagnosis, genetic counselling and the opportunities for novel therapeutic interventions;
• To encourage and support healthcare and academic institutions to design guidelines and care protocols to establish adequate standards in the management of urological, surgical and rehabilitations care
• To work alongside ministry of health to strengthen infrastructures to improve multidisciplinary health care, evidence-based management and collection of secure patient data such as through a patient registry;
• To encourage discussions around the coordination and continuity of healthcare for optimising transitioning from childhood to adulthood care to promote independent living.

Our heartfelt congratulations to SiBIAM as hosting association. This conference was a starting point for future meetings whereby we continue building bridges together!

Conference Resources

• Conference Website: https://sbhconference2024.com/
• Conference Programme Book: https://lnkd.in/eg-fz4k4
• Kuala Lumpur Declaration 
• Picture Gallery: https://sbhconference2024.com/image-gallery
• Celebration of the WSBHD24 at the Conference in Malaysia see video here
• Stay tuned for more highlights of the Conference!