The Kuala Lumpur Declaration of the 30th International Conference on Spina Bifida and Hydrocephalus
The Kuala Lumpur Declaration: a call to co-sign
The 30th International Conference on Spina Bifida and Hydrocephalus, convened in Kuala Lumpur from October 24th to 26th, resulted in a historic declaration that calls for global action to improve the prevention of Neural Tube Defects (NTDs) and ensure continuous, coordinated, and inclusive multidisciplinary care for individuals affected by spina bifida and /or hydrocephalus (SBH) throughout all stages of life, from childhood to adulthood. This event brought together experts, researchers, healthcare professionals, members of the SBH community, and their families to discuss solution that can break down barriers and improve quality of life.
The Spina Bifida & Hydrocephalus Association of Malaysia (SIBIAM) and the International Federation for Spina Bifida and Hydrocephalus (IF), organizers of the 30th International Conference on Spina Bifida and Hydrocephalus facilitated discussions and collaboration, concluding with the call on all relevant stakeholders to support and implement the resulting commitments:
- 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 early education and awareness creation, the importance of prevention and 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 healthcare professionals, 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 optimizing transitioning from childhood to adulthood care to promote independent living.
Read the Kuala Lumpur Declaration here
We are seeking co-signatories for this declaration to ensure that our message reaches governments, international organizations, healthcare professionals, and the general public. Your support is crucial to raising awareness and strengthening the global commitment to these vital issues.
Anyone with an interest in SBH who is in support of this Declaration is invited to join the call for commitments by co-signing the Kuala Lumpur Declaration.
To become a signatory of Kuala Lumpur Declaration, please complete the Google Form.
Your support will help promote meaningful change!
