At SLC6A1-Spain we welcome with hope the announcement that the World Health Organization will recognise SLC6A1-associated developmental and epileptic encephalopathy by including it in the ICD-10 classification.
The ICD-10 is an international classification used to organise and code health diagnoses. The recognition of an SLC6A1-related condition is a significant step towards making this rare disease visible within healthcare systems.
For affected people and families, having a recognised place for a disease in an international classification can help make their reality more visible in different settings. It also highlights the importance of continuing to advance knowledge, care and research on SLC6A1.
This announcement comes a decade after the publication of the first scientific article from the Carvill laboratory and after five years of efforts led by SLC6A1 Connect. We recognise the sustained work of all the people, families, professionals and researchers who have helped keep this cause on the scientific and healthcare agenda.
We will continue to share progress on this process with caution and confidence. Every step that helps identify and raise awareness of SLC6A1-associated developmental and epileptic encephalopathy strengthens our community and keeps the door open to further progress.
