IF response to the Special Rapporteur on the Rights of Persons with Disabilities

3 April 2018 // The Special Rapporteur on the rights of persons with disabilities Catalina Devandas-Aguilar is preparing a study on “the right of persons with disabilities to the highest attainable standard of health”. She welcomed inputs from everyone with an interest to assess the realisation of this right around the world. IF has submitted a response to highlight the most important challenges that people with spina bifida and hydrocephalus encounter in the various healthcare systems and throughout their lives, and which steps need to be taken to ensure their right to health.

The IF submission points out the underlying obstacles to reaching the highest attainable standard of health for people living with spina bifida and hydrocephalus: lack of data, lack of knowledge, lack of accessibility, lack of access to novel procedures and lack of access to regular healthcare. To fill the gaps and to remove health inequalities, IF stresses the importance of registration at birth, developing patient registries, and having access to multidisciplinary care. Raising awareness on the rights of persons with disabilities, throughout the whole of society, and access to Universal Health Coverage are essential too. Together, these are key factors in ensuring that people living with spina bifida and hydrocephalus will have access to the best possible treatment and care across the lifespan.

The full response can be found here and will provide a more detailed overview.